Very worried about delays and lack of response to name in 16 month old

Debbie - posted on 08/15/2009

my son had started speech at 1 year old he had the same problems as yours along with being a premie. Ask for a referral to a speech theripst as soon as possible. An evulation will detirmine if it is a dely or something more. Intervention helped with Cody considerablly. He didn't say a word until he was over 2 and almost 2 years later he won't quit talking.

Melissa - posted on 07/27/2009

My son was 1 1/2 years old and we were lucky his dr. listened to me. He didnt respond to his name and he didnt know we were mom and dad. That's all it took for a referral. I do have friends that their dr. waits till after 2. If your dr. wont refer you please call your local school board. In louisiana we have an early intervention program and children birth - 3 can have services in their home for free. It can include a teacher once a week, a speech therapist , an occupational therapist etc.......some even provide nutritionist. In our program the referral doesnt have to come from a dr. it can come from a parent. Its a good place to start, the earlier you start the better their brains can re-organize things and they are able to adapt better. We started at 19 months with the school offered therapies at home and he was so severe we added outside therapy too. He is now 7 and the autism is still there but we are getting by in a regular class room and an aide to help him. Early intervention is best.

Terri - posted on 07/27/2009

Definitely get an assessment! My son did and started specialized schooling at 21 months old. He got an official autistic diagnosis shortly before his 2nd birthday. He was VERY autistic then.

He is now 9 1/2 yrs old and is now very high functioning! He is now mainstreamed in school (this started in 3rd grade) with a 2 1/4 pull out for special help. He's a happy, cool, quirky kid.

So if you suspect your child has autism, there's hope! Early intervention is KEY!

Terri

Geralyn - posted on 07/27/2009

I have known children who were diagnosed at 12 months and 15 months. Definitely do not listen to your pediatrician. I would find an autism expert and have him/her conduct an assessment. [I have also been told that hearing impairments can have some of the symptoms that you've noted. Maybe a hearing test to identify or rule out? Just a thought.]



Even though he's only 16 months right now, it can take some time to go through the eligibility process with the responsible agency or agencies, and then get services lined up. Also, some of the experts have wait lists. I wish you luck ... and answers...

Wendy - posted on 07/26/2009

I know how you feel. My daughter did the same things. And the Dr's and everyone else said the same thing to me "she's still so young". i waited till my daughter Sirena was two and half to call early intervention and had her tested. I couldnt take it anymore and was very depressed. Especially bc i was a preschool teacher and knew my daughter was way behind. She got speech, and behaviour mod till she was three. Then was tested by our school district. She got into a special ed inclusion program. She gets speech and occupational therapy. But it wasnt till I took her to a pediatric neuro this past march that i finally got answers and a dianosis. My daughter has pdd-nos a autism spectrum disorder. My daughter is currently in a summer program for preschool disabled and is finally making progress. Im not saying your son has autism. But if you think somethings not right get it checked out. I still kick myself for not seeing a pediatric neuro sooner.

Ylem - posted on 07/25/2009

Hi Jennifer, as a mother of an autistic child and a Special Ed Paraeducator I cannot emphasize enough the need for early intervention. Your son sounds a lot like my son at that age. Unfortunately I waited to get him tested, even though I knew better... I played the "lets wait and see" game with my doctor. I got him tested before the age of three (when I could no longer pretend it was just a delay). Originally he had a psychoeducational assesment performed by our local school district. At that time he was only diagnosed with a speech delay. My son is high functioning and he had some language, but the school district could not tell for sure. They suggested I had him checked by our local Regional Center, just in case... He was diagnosed a few years ago and since then he has made substantial progress (he's 6). Sometimes I wonder if he'd be doing even better had I started getting him the help he needed earlier... Trust your instincts. You know your son better than anyone. Get an assesment from your local Regional Center. They will let you know if you have reason to be concerned or not. I truly wish you the best of luck.

Di - posted on 07/24/2009

Hi Jennifer the only thing I can really say to you is follow your mothers instinct ask your doctor for a referral to a pediatrician. If you have your son checked out by a specialist ;baby doctor' and he/she says he is fine then you will be reassured if however he is diagnosed with a developmental delay the earlier intervention is started the better and faster the results. It is difficult not to compare children with others the same age (even with his twin) but remember all children are INDIVIDUALS milestone markers are just that they are markers and need to be used as a 'reference' all children develop at different rates but having said that I do urge you to get hin looked at by a doctor who specializes in children. Good luck and remember no one knows your child/children like you do.

Ali - posted on 07/24/2009

Definitly talk to your pedritrician about the delays and your concerns. If you do not get the response you want from that dr request a second opinion. Early intervention is key with Autism if indeed it is Autism. Speech Thereapy is a wonderful tool to help with the speech delay. You know your children better than anyone so push for it and push hard. No one is going to advocate for your children better than you. Good Luck and Stay strong.

Jen - posted on 07/23/2009

I would definitely seek out early intervention and autistic spectrum testing.. I know the programs in my area make you wait until 18 months to be tested. My friend's son got tested at 18 months and they are going to review the results tomorrow and start some very vigorous therapy. He is already in speech and occupational therapy, but this therapy will go beyond that in hope of getting him up to par. Like you son he is uninterested in play, and talking very minimal. If your doctor doesn't acknowledge your son's delays I would find another doctor that will. Good luck and stay strong.

Christine - posted on 07/23/2009

Hi Jennifer, my son went through similar delays to your son at approximately the same age. My son was giving me limited eye contact, speech delays, and other delays. I would DEFINATELY see another doctor without hesitation regarding your son's needs as early intervention is the key whether he has autism spectrum or not. I would also recommend you looking into getting speech therapy and occupational therapy for your son as soon as possible. My son started around 17 months occupational therapy and speech therapy and was well worth it! He is 4 years old now and the eye contact, speech and other needs have tremendously improved and I believe this is all due to early invention. If you have any other questions feel free to add me to your Facebook. Sincerely, Christine

Merribeth - posted on 07/23/2009

You should get an evaluation from early Intervention in your state. They are usually free. You are your childs best advocate.

Alicia - posted on 07/23/2009

My son Liam is autistic and your son sounds a lot like him at that age. I know that isn't what you want to hear. Liam would sit in his crib at night in a dark room and start laughing for reasons that completely escaped us. He made eye contact but didn't maintain it for long. He didn't have words other than dad although he babbled incomprehensibly. He also would pace but for him is was a side to side motion. The repeditive behaviour is called self stimulation or stiming. Your doctor is wrong, it isn't too early to get him evaluated. It is harder when they are this young but possible. If he gets a diagnosis he will be eligable for services and the earlier you can get those for him the better off he will be. Early intervention is critical with autistic children. If he is autistic he can improve the way he interacts with the world significantly with the right therapy. I can't count the number of times I heard people tell me a lot of boys didn't speak until later in life and my son was two at the time. I think the most common piece of advice I've read on this board is absolutely true, trust your instincts and advocate for your child. Sometimes we have to push and demand. It's o.k. to do that. Doctors are human and make mistakes like the rest of us. Don't just accept what your pediatrician is saying. Remember he works for you :).

Contact your school district and ask about how to begin an evaluation of his behaviours. The process takes time so you're going to have to practice some patience. It can take 4-5 months to get a diagnosis. Each state will have guidlines for how long the district is allowed to take to finish the eval. Here in MN it is 60 days which is actually very short compared to some of the others. This will probably not be considered a diagnosis but a determination of services. For an actual diagnosis find a developmental pediatrician, nuerologist and or pshycologist who specializes is pediatrics and make sure they have experience with autism. The gold standard for testing is a team approach using the three or more people who evaluates your childs speech, physical health and behaviour/development. Try to find a team who uses the ADOS as one of their tools. It's typicaly considered the best most acurate test to use and not everyone is trained on it.

There are a few things you can do while you're waiting to start working on this with both boys actually. When you call them and they don't respond don't give up. Get down on their level and be insistant until they hear you. Sometimes physical contact like taking his face inbetween your hands and gently turning him to face you will be enough to break through. Keep talking to them both and trying to interact as much as possible. You want to try and engage him. Also pay attention to what sets him to pacing. Does he have triggers? Does he start pacing when his brother tries to play with him or when he needs a diaper change or is hungry/thirsty? He may not have triggers but if he does you can minimize them to provide more opportunity for him to be engaged. If he isn't pacing you have a better chance of breaking through to him.

Hope this was helpfull. If you have any more specific questions or just want to talk let me know.

Alicia

Sally - posted on 07/22/2009

I would definitely get an assessment...I have heard time and time again from moms whose doctors put them off or minimize their concerns. Moms know their kids better than anyone. Remember that! You are his best advocate. Early intervention (whether he is diagnosed on the autism spectrum or not) is essential for the best outcome.
~Sally, autism/behavior consultant in Oregon

Agatha - posted on 07/22/2009

My son started with early intervention for lack of speech at 18 months. It took about a month to get this started, so we started at 17 months. In my opinion it is not to early to at least address the speech delay. In my state it is called early intervention, everywhere it is different what it is called. Where do you live then maybe someone can help you where you are located to contact the proper services. Your pediatrician should be able to direct you too. I would push your pediatrician on addressing the speech delay. It can't hurt to start early. Once you get the services started they can do additional evaluations if necessary and you can address more specific questions to them. I hope this helps.

Agatha - posted on 07/22/2009

My son started with early intervention for lack of speech at 18 months. It took about a month to get this started, so we started at 17 months. In my opinion it is not to early to at least address the speech delay. In my state it is called early intervention, everywhere it is different what it is called. Where do you live then maybe someone can help you where you are located to contact the proper services. Your pediatrician should be able to direct you too. I would push your pediatrician on addressing the speech delay. It can't hurt to start early. Once you get the services started they can do additional evaluations if necessary and you can address more specific questions to them. I hope this helps.