Please Help | Autism PDD

hello,
I am hoping someone can help me! My son Christopher was born at 29 weeks, we waited 11 years for him. Christopher has been involved with EI since birth he has a SP, DT and a orthopedic that comes to the house, Christopher has maybe 15-20 words he is 29 mo. but he seems to lose words and than when you remind him of the word he will begin to use the word again. He is not gaining new words; He has many tantrums through the day where he throws himself on the floor sometimes hurting himself (i.e.) bumping head or body part. He rubs my ears or anyone’s ears constantly, is hard to hold attention, very hyper but calms when you sing to him. Christopher does not really talk but he is able to memorize the script of an Elmo show and say the words verbatim with the character. His eye contact is not good but he does make eye contact. I guess I am trying to see if what I am describing is an issue or am I crazy and these are the things that kids do, EI always makes me feel as though I am looking for a issue but I feel if they didn't think there was an issue why would they be involved for 2.5 years and why does the Neurologist see him every 6 months I guess I am trying to see if anyone else's child display any of the things I have described.

I am also thinking of moving back to Queens NY from PA my only resorvation is the ability to find services in a timely fashion in NY also I wory that if he is Autistic the city my not be the best place for him to be raised

My son was rubbed people's ears, too. It's a sensory-seeking behavior. Has your child ever been evaluated by an occupational therapist? If not, this checklist can help you identify your child's sensory issues.

http://www.sensory-processing-disorder.com/sensory-processin g-disorder-checklist.html

In my opinion, the wait and see attitude isn't wise. Time does nothing -- it's what you fill that time with. Hang in there until you're sure you have adequate help and targeted stimulation for your son's delays. A definitive diagnosis can wait, but intervention can't.

Good luck with everything.

I also think that the EI team feels we are doing everything we should be doing for him as well as his nero I will find a developmental ped ASAP. Thanks again for everyones thoughts.I was told to "wait and see" by ECI and by our pediatrician. I really regret taking that advice, it didn't do my dd any favors and made her life much worse, she just kept becoming more and more withdrawn (and I was becoming more unhinged!). Finally when she was 3.5 and I had the pants scared off me about how delayed she was I went to the pediatrician with a (second) list of (new) observations and started making a lot of noise about my concerns. And wouldn't you know, I was right. Go with your gut, don't wait. The earlier you start the better the outcome will be for your child.

[QUOTE=Allegra]I would not tend to go on the assumption that he will grow out of it. Do what you can for him and push for a full autism eval. If he does grow out of it and catch up then great. But if he is autistic you don't want to waste too much time because you aren't sure. You should tell the neuro that. A false positive to access services and he then catches up is a far better scenario than leaving it in my opinion. [/QUOTE]

I'll add my ditto to this...

My thoughts...you are on the mark. These things sound like spectrum stuff regardless of what the catalyst for the behaviors are (29 weeks or not). The problem with the doc's "wait and see attitude" is that time is your enemy here. I donot mean to sound alarmist, but you deserve, your babe deserves the services now and at 36 months it will be a battle whereas right now they have to do something. As for prognosis...I would never make that call. Everyone is different.

I would make a new appt w/ the neuro to discuss these latest concerns. I have in the past made a list of observations/concerns & questions for the neuro. Make 2 copies, & hand one to him. That way, he can read all that is going on, you won't forget anything, etc. He may have some valuable insights. You may also want to see a psychologist if the issues continue. For us, we tend to monitor how long something is occurring (see if we can find any patterns--lack of sleep, diet, etc.). If we can't find a pattern & things continue for a time, we look to the professionals for help.

While some of what you describe could also be used to describe a child on the spectrum, you may want to rule out physical causes. Has he seen an ENT? I would make sure he has a hearing test & that his ear function is not causing his speech delays. Also, it may be worthwhile to see an eye doctor and/or an allergist. Our dd has some food sensitivities & when younger some excess mucus in her eyes. We thought this may have to do w/ some of her behaviors, hyperness, & constant eye/nose rubbling. Our dd did need ear tubes, allergy medicine & eye drops, etc. We ruled out physical causes for what we were seeing. By the time she was 3, her physical health issues were either resolved, being treated, or others has been ruled out. So, what she was experiencing, can safely be said to be neurological & psychological. That prompted her autism eval & diagnosis. With children who have delays, I think it's important to make sure things like reflux, allergies, & ear infections aren't playing a bigger role in socialization, tantrums, etc.

As for EI, they seem hit or miss when it comes to autism. Some parents here were first told about autism by their EI team. For others, their EI team wouldn't even discuss it. I think it depends where you are, what your team's experience is, etc. In the past & even now, a lot of children are not dx'd with autism until after 3. So, the majority of kids in EI do not have an autism diagnosis--so this may make it harder for EI teams to even see the signs of PDD. And then, are they legally able to bring up their concerns, etc. For us, once our doctors started saying things like "like-PDD" & "autistic behaviors" etc., then the EI staff was like "oh yeah, that makes sense." So, they may not be the best gage for what is going on.

Had to add...FOLLOW YOUR GUT! Our mother's intuition is often our greatest gift.
Elle2239343.3353356481I would not tend to go on the assumption that he will grow out of it. Do what you can for him and push for a full autism eval. If he does grow out of it and catch up then great. But if he is autistic you don't want to waste too much time because you aren't sure. You should tell the neuro that. A false positive to access services and he then catches up is a far better scenario than leaving it in my opinion. I really want to thank all who replied, Sometimes I feel like I could be wrong, I know I am not.Someone told me about boards like this and I never visited I am glad I did. The neuro is reserved he has a wait and see attitude this is not to discredit him I actually think he is wonderful as far as ordering test when I bring up issues. Dr. Barron is very no nonsense and many say he dismisses them ASAP but he has seen Christopher every 6 months since birth and always says well he is a 29 weeker and this things can happen when a child is born at that age. What bothers me is I feel they all pretty much know what the problem is but are not telling me. His EI yearly eval was last week and he has been referred to the 3yr + program when their services cease next June. I just want to know What this is will he out grow it should I do more.Wow, some of that sounds like my daughter..she just turned 2. The falling to the floor, also with the calming of our singing. I would say that perhaps you should bring this up to the Neuro if EI isn't interested in hearing you. For me, it's hard to tell what is typical 2 year old behavior, versus spectrumy behavior...even after having 4 older ones! Mine does have language delay, auditory processing and sensory stuff. She is very social as well...good eye contact,etc. I'm on a waiting list for dx evaluation, but I was told that a lot of dr's shy away from dx until 3, because it's hard to tell sometimes. I don't quite understand why EI is denying the importance of your observations. I, for one, do not think you are crazy at all! Definitely bring all of these issues to a Dev. Ped or your Neuro. The scripting, the stimming, the self-injurious behaviors, 15-20 words at 29 months...you're not crazy at all.Follow your instincts. Find a doctor or therapists that will listen to you. I say these things because the earlier you know the better. There are a lot of things to try to help your child if you know what is going on. I think from what you have described your child could likely have autism. My daughter has most of the behaviors and many more but was still well and truly non verbal at your sons age. I don't understand why your concerns are not being taken seriously. Can you tell me more about what the neuro has said since he has been seeing your son?
Are they saying his issues are just caused by him being so early? It could be hard to tell what is from that and what is not.
Allegra39343.3230324074Thank you! Everytime I bring up something I see as quirky behavior I am told just enjoy Christopher stop looking for a label, which I am not I just know in my heart that something is not quite right and I worry I worry about his quality of life and more so I worry that I may not be doing something he needs. I work FT but in April of 08 I am going to start staying home with him, I see him falling behind, I can look on his face and see he really does not understand what we are saying to him, he also sways constantly when watching a program.

My childs dr was of the wait and see frame of mind. He did not take my concerns seriously. I being in denial and hearing what I wanted to here cost my son a lot of valuable time. This is the biggest mistake I have ever made and my son has lost valuable time. Things did not get obvious until around 2 1/2 to 3

Don't make the mistake I did. You are his mom NO ONE knows better than you when something is not right. Go with you gut.

Christopher,

Has had his hearing checked several times, No problems there The EI team said his receptive skills are at 13 mo. and expressive at 22 mo. the Nero said there is a delay in the experssive area.

Forgot to say:

WELCOME!! Glad you found this board, tons of support & advice here. Go with your instincts. Keep us posted.

Zayzer,

You are right, I know I am his only advocate.

I too see a lot of "red flags." You are describing behaviors that my son still has or had at that age.

I guess the one thing I am thinking is that maybe they don't feel they would be doing anything different with him in EI whether he has the ASD dx or not???

But for your own peace of mind I agree that talking to his neuro or a dev. ped might be the best thing for you to do.

I'll ditto what others have said.

One other suggestion that I'll make is to make a video. This summer I took my son for a private neuropsych evaluation. We did evaluations through the school, but I just wanted a 2nd opinion from a doctor. She met with C and I for three 2 hour sessions in her office (an hour away) but I was concerned that from those interactions she wouldn't get a full picture of his level of functioning. I made a video, about 5 minutes long, with some clips of C interacting with us, interacting with his brother, talking, having a time out, etc. I uploaded it to youtube and played it in the doctor's office. She told me that she found it incredibly helpful and that she wished all parents would do something like that.

Pictures speak louder than words! It's one thing to give a list of observations, it's another thing to video tape your child doing (or not doing as the case may be) things on your list.