Hi all,
I am a very concerned mother of a 15 month old boy. He was born 3 months premature, which puts him at about 12 months adjusted age. I am noticing more and more things that just don't seem right. However, people that I try to talk to about this (EI, his pedi, my inlaws) aren't willing to hear me out and say things like "he's a boy, little boys are different" and "he is just too busy playing to be bothered with cuddling, leave him be."
Well that's odd considering every assessment I've ever read on the subject of ASD says otherwise. There are some undeniable delays and even some odd behavior that feels off. Am I crazy? Am I just misreading everything? My gut and heart both tell me something is wrong but no one is listening to me. (Well my husband and my mom are, but no one else.)
Things he does:
1) He does crawl/pull to a stand, but he is very clumsy and seems like he kind of drags his right side when crawling. (It's very uneven.) He did this at 9 months adjusted (3 months ago) after being in physical therapy for gross motor skills. He had quite a lag.
2) He sits, sort of. We had major problems with this area right up until a few months ago where he would arch back and refuse to be placed in a sitting position. He doesn't do this as much now, but tends to "W" sit 95% of the time. When we place him out of the W position, he is very unsteady and seems to fall back quite a bit.
3) He is just now starting to form the pincer grasp, but very crudely and only with one hand. From what I understand, this skill was supposed to have already been developed.
4) He babbles...sort of. He has been stuck on dadadada for a long time and can sometimes do nanananana but no other combinations (such as dabebana etc) and no inflection of voice. His tone doesn't really change.
5) He will at times smile and laugh, but those are short lived and often have to be really worked for. Most of the time he is too much in his own world to pay attention to that kind of thing.
6) He looks at us (and others), but only for short amounts of time and if it's a longer amount of time, it's almost always AT an object we have, not our eyes. For example he fixates on a necklace we are wearing or a can of pop we have as opposed to looking at us for attention or approval.
7) He seems very independent, to a fault. He only plays by himself. We try all day long to play with him and he either doesn't notice us or focuses on his toys. He will oftentimes play in another room for long periods of time and not even be concerned with where we are.
8) He is very irritable when we interact with him. Everything sets him off. The rule of thumb seems to be that if we leave him alone, he is fine and content to play alone. If we are around him, or take something away he shouldnt have, or won't let him have something we have and he wants, or even if we try to touch the toy he is playing with, he immediately throws a fit.
9) He actually tends to avoid us. Seriously, if he does happen to hear or see us coming, he crawls away. If we sit in front of him, he either ignores us or crawls away.
10) He does do things like hand flapping, hair pulling, shaking head side to side, and fixating on spinning objects. He only focuses on parts that spin on his toys and even spins himself or other objects (such a cd tower.)
11) He is also very hyperactive..always on the go and always has to be moving. He does not sleep well and throws tantrums at every nap. He fights sleep in any way he can for over an hour each time.
What he doesn't do:
1) He does not try to carry conversations nor imitate our tone of voice. We may occasionally get an "ahhhh" back from him when we do it first, but that's about it. We can say "uh oh" "dadada" or anything else to him and for the most part he is silent. Most of his vocalizations are to himself.
2) He does not know who "mama" or "dada" are, nor does he say them at all much less specifically. (He says dadadada but it's a long repetition as opposed to "dada.") If someone asks him where mama or dada are, he cannot look or point at the appropriate person.
3) There are no gestures like pointing, waving, or shaking head for no. He has never raised his arms up to signify that he wants to be picked up.
4) There is no imitation of gestures or facial expressions or actions save for raspberries. He learned how to do raspberries 6 months ago and there has been nothing since. No sticking out of the tongue, no waving, no nothing.
5) He refuses to be held or picked up. He's always been this way but lately it seems to be getting worse. He struggles against you, pushes away, screams, cries, and about arches out of your arms just to get away. There is never an ok time to hold him or even place him in your lap. There are times when all you have to do is pick him up and he starts fussing and raises his arms straight up so he basically slips out of your grip.
8) He will not look you directly in the eye if you try to face him or hold him facing you. He puts his arm out, pushes away, cries, and then frantically looks everywhere but your face.
9) He has no purposeful play. He cannot stack or nest things, nor does he know proper use of items such as a hair brush or cellphone. He plays with everything the exact same way, usually in a very crude, early infant manner.
10) You absolutely cannot touch his hands. He yanks them away and cries when you touch them, and often keeps them closed.
11) He does not self feed. He can sort of use the crude pincer grasp to place a puff in his mouth, but will not touch his bottle nor reach for the spoon.
12) He does not orient to his name. But if you snap your fingers he will look up.
13) He does not understand simple commands like "come here", "show me", or "no." He actually laughs when we get stern with him which tells me he also lacks what they call empathy. (I guess meaning he cannot discern emotion from tone or facial expression.)
14) There are no moments of sharing. He does not show toys to you, hand them to you, or even try to involve you in his play. He lacks joint attention and the concept of object permanace and also does not play games such a pat-a-cake or peekaboo. He won't even watch us do it much less actively participate.
15) Basically put, there is NO kind of parent/child interaction unless he is climbing on us to get to something he wants. It's always an object with him, never about the person. There is also no stranger or seperation anxiety and never has been. We try every way we can to play with him and he ignores us, throws a fit, and crawls away.
Can anyone see my reason for concern? I mean, there is NO communication nor progress in social/play skills. We have NO idea what he wants unless we just guess. My husband and I feel totally useless and like the only time our son even cares about us is when he wants fed. Who do I turn to if everyone refuses to even listen to my concerns simply because he is so young? Do we just ignore everything and hope he grows out of it?
It sounds like you have reason to be concerned. Most pediatricians are supposed to check for autism at certain intervals now and most definitely by the time a child is 15 months old. Based upon you have described about your child and how you brought the matter up with your doctor and he dismissed it, tells me that he is very old school and is not keeping up with current research and literature. I would get a new doctor, someone that seems to have a good reputation for keeping current, and address your issues with him/her. He/she should give you a referral to your State's early intervention program. I would also suggest, if you have insurance and can afford it, to have your son checked out by the following specialists:
developmental pediatrician
neurologist
speech therapist
occupational therapist
hearing test
I've found that when you are the one paying for the service (through your insurance, of course), the specialists usually tend to be more candid and helpful. At least that has been my own personal experience.
Autism is recoverable but early intervention is the key. The sooner you start, the better. If you have any questions at all as you are going through this process, please do not hesitate to send me a message and I will help you the best I can.
Wishing all the best for you and your son.
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M.R.
answers from
Columbus
on
I do. I have a very high functioning autistic child, and a lot of what you are saying we saw early on as well. No matter what anyone else says, all you had to say to me what that your gut is telling you that something is wrong, and you should always, always trust it. Just because I see simularities, don't jump to any conclusions here, just find out for sure from the best professional you can as soon as you can.
Call your nearest children's hospital and make an appointment with a developmental pediatrician. This is not your regular pediatrician, this is a specialist who will call in every professional you may need to know exactly what is, and what isn't going on. Just that he was premature is reason enough to make this appointment. Call in the morning, and don't hesitate for a second. It will take several months before they will be able to see you, but it will be worth it. Either something is wrong, and you will know very early and can help him, or they will tell you to stop worrying and that everything will be fine. Either way, you get something you need desperately.
I wish you all the best. You will likely get responses that say not to worry, that their neighbor's husband's sister had a child who did the same and is now a rocket scientist, but that has no more to do with your son than my experience does. I am just here to tell you that some kids who do this at this age have issues, and the sooner you know if that applies to your son, the better.
M.
PS: DAN is risky. Once you have a diagnosis, if you have a diagnosis, it will be up to you to decide what direction you want to go with treatmen. We have had wonderful results with standard medical treament, therapy, education, and hard work. I don't know anyone who has left standard treatment to go back do DAN when they were disapointed and ripped off, but I do know many who have faced the opposite. Just be very careful.
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A.A.
answers from
Denver
on
I think he's probably too little to say exactly what is going on in terms of labels like Autism. But certainly something is still going on with him. A developmental specialist can certainly evaluate him and help you come up with ways to keep working on growth. I think you need a label less than you need a helper, and some doctors are unwilling to hear you when you come in with a label in mind.
I would find a developmental specialist and take him in for an appointment, along with what you just typed out here. That said, premature babies can have all sorts of anomalies that they can sometimes grow out of later in toddler-hood. Some of this may go away on it's own as he continues to grow. But that doesn't mean that you couldn't work with someone to maximize the chances.
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T.B.
answers from
Chicago
on
I agree 100% with the others that say "trust your gut" and have your son evaluated. It's interesting, but most peds I've heard of are very eager to rule out potential issues. If yours is not willing to go along with your wishes/ concerns, I'd find another.
One thing I wanted to let you know is that a friend of mine had a premie daughter. I believe she was born around 30 weeks or so, and she has been in PT for problems with walking. She used to sit like a W before too, and they said it was one of the worst things for a child's hips, so try to discourage him from sitting that way, it might cause some walking problems for him down the road.
He will probably resist a lot of the work you do in PT/ OT, but it will be good for you and your husband to learn how to challenge him in a good way, and teach him to do things differently. Hang in there. Whether you find out that he is fine, or if you find out he needs some help, at least you will get some much-needed answers. Good for you for being such a good mom, and for being so concerned and proactive for your son.
go talk to a new pediatrician... and then if that does no good.. talk to another type of dr. i don't what town you live in.. but if you are in jersey.. Dr. Moskowitz in New Providence is great.. if you are near NY.. their are so many great drs.. or philly.... where ever you are.. don't let this go on to much longer.. you have to see someone... it soundsl ike he has some issues... and the sooner you deal with it... the better. you can call your school system.. sometimes they can help with what type of dr. to take him too... good luck.. god bless all of you...
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C.D.
answers from
Los Angeles
on
My daughter has Asperger's, and what I learned is to trust your instinct! Your son is young, but you can make more progress with services while he's young!
I know nothing about autism, but I absolutely believe that you are correct in your thinking. What you should do is copy and paste everything you wrote here and in your other post and start a journal of sorts to document this behavior and keep doing it as you see and feel anything change. You are extremely intuitive and will be your baby's best advocate. Have all of that information printed out and take it with you to every doctors appointment you make. Anyone who thinks that this behavior is nothing to be concerned about, well, I wouldn't see them again. What was he like as a newborn? Did you have a normal delivery?
Hang in there, it may take a while to get some help, stay strong and determined.
((hugs))
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E.M.
answers from
Denver
on
I think you are very perceptive and need to address all of the above with your pediatrician. You can have him evaluated by a developmental specialist this young and should be able to get some early intervention/therapy help. DO NOT ignore any of it. It is not typical and you already know it. Keep insisting and insisting that he is evaluated until you find someone who will listen.
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N.S.
answers from
Chicago
on
Usually the parent's gut feelings on their own children are correct. Unfortunately many pediatricians ignore the symptoms, or when they do appear, prescribe drugs.
I suggest you contact the Autism Research Institute http://www.autism.com/index.asp and look for a DAN doctor in your area. As opposed to prescribing mind-altering drugs or ignoring you, a DAN doctor can help determine if it is Autism and what kind of treatments would work in your case. They use biomedical/non drug supplements and diet changes. So many people have had symptoms disappear or become very manageable with natural supplements, diet changes and detox. Why not try this first? At least look at the website.
Please do it soon. At your child's stage of development, every day counts.
Good luck!
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K.C.
answers from
Philadelphia
on
Yes, I think you do have cause for concern. My son's ped told us nothing was wrong at his 4yr checkup, even though I KNEW there was something going on. Since then, he's been diagnosed with ADHD, PDD-NOS (an ASD), sensory issues, Tourettes and allergies of all sorts. He's 12 now and in a really good place, but it took many years to get to this point. Go with your gut and get a referral for a Child Developmental Specialist (insist upon it with your pediatrician if you must). Good luck!
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L.D.
answers from
Washington DC
on
Do you have any other children? I raised six and now have 28 grandchildren and I think it is a little early to tell. There is a very wide range of normal at age 12 months. There is also a wide range of how babies show affection and what I am hearing you describe is an independent one year old boy. One of my grandsons was three before he started talking and 15 months before he walked and is graduating from high school as an honor student this year. Be patient with your baby.
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M.B.
answers from
Washington DC
on
I'm not quite sure how accurate a diagnosis would be at such an early age. I'd go see a specialist (developmental), but do not try to force out a diagnosis... if he is "labeled" improperly he won't get the right help. Whatever the case may be, take things SLOWLY. Yes, it is good to find these things out early, but there is such a thing as too early.
Also, I wanted to say that some things you had on the list are still within "normal" range... And while you don't know everything about him yet, remember that he's just one so try to enjoy him and have fun with him "his way"... they grow up SOO fast and you don't want to fixate on anything that could worry you- they pick up on things like that whether they show it or not. Good luck!
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R.Y.
answers from
New York
on
I am not much of an expert on autism but you list several things that are possible markers for it. I would definitely find someone who is expereinced with autism to evaluate him. If it isn't autism then there is something significant going on and you are probably better to get treatment started sooner than later. On the other hand I was a case manager for child protective services and saw many children born with problems (drug addicted, low birth weight, premature, etc.) and some made tremendous progress in a good home with the right services. I was recently reading a book called Quirky Kids which has a lot of information for parents of children who don't exactly fit any specific diagnosis. There is also quite a lot of information on Autism available but I am not that familiar with it to give you a good place to start looking except maybe a support group for parents of children with Autism so you don't feel you are dealing with this all alone.
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L.P.
answers from
Pittsburgh
on
You obviously have very valid concerns. Your son is certainly demonstrating some developmental delays and apparently some defecits in social skill development. Your feelings are not unwarrented and I'd recommend having him evaluated by a developmental specialist. Seek a child psychologist for an evaluation and provide at least the info you provided above. Your pediatrician was remiss in dismissing your concerns, and I'd look for a different pediatrician and get a second opinion there as well. Early intervention is KEY in addressing developmental issues.
Best wishes to you. Know that your son loves you, even if he can't show it. Hopefully soon, you will have more insight into his development, and whatever you find, you will be given some tools for better understanding and helping him. Keep advocating for your son. God bless.
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M.A.
answers from
Houston
on
Great day in the mornin' !!! Take a breath for Gods sake..... The more you act worried, the more HE will act worried. He WILL learn from you! PLEASE dont take info from this site if its SOOOO bad. GO TO A DOCTOR! A blog is NO WHERE NEAR a doctors evaluation. Web-sites are not a subsitute for medical advice.
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L.N.
answers from
New York
on
your post was very clear and to the point. print it out and seekk a new pediatrician. ask around, preferably, parents of autistic kids and see who diagnosed their children. then take your son to have him evaluated. i don't know much about autism so i can't say either way but i can say doctors miss things a lot of times, and parents need to continue following their gut.
you also have to remember your son was born prematurely. that will come into play many times until age 5, i have been told, then somehow premature babies catch up to their peers.
good luck
