Hi guys new here

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

Moderator: ModeratorBill

Posts: 2
Joined: Thu Feb 11, 2016 1:07 am

Hi guys new here

Postby Drummerdad85 » Thu Feb 11, 2016 1:49 am

Well this all started about 5 months ago when i got a phone call at work. It was about my then 12 month old had another meltdown at daycare because one of the other kids touched him. Not in a bad way or anything just put her hand on his sholder. Little did I know that this jad been happening for several months now and the daycare lady (family friend) sugested bringing it up to the pediatrician. We follwed suit and made a well visit appointment. The doctor asked us all kinds of questions about our son. All of the standard development questions about eye contact, name response, pointing, talking all of it. Turns out we must of not answered correctly because sure enough we were reffered to early intervention with a program in our state that helps with this sort of thing.

Hes 19 months old now and is still a loner he. Does better at daycare, not 100 percent but hell atleast laugh and get those arms flappin when kids are running by him but he still doesnt like it when they touch him. He also really really likes to spin things the wheels on his trucks and cars and also toys that arnt really made for spinning like his little toy drum. Spinning must be really fun because not only does he enjoy slinning toys and ceiling fans but also himself! Whenever he feels the need too hell just kinda spin around in a circle. He looks silly when he does because his eyes are like to the side. Me and my wife call em side eyes because thats really what he does hell look out of his like periphreal vision while spinning, even when running around the house hell usually do it. But he enjoys it so hey have at it lol. His eye contact is still poor. Hes only said dadada for the past 6 months. Hes kinda eased up on the spinning toys and now likes to build little piles of toys around the house and his room. Hes never given us anything like food or toys. He still does not point or wave nor will he follow a point. Chewing has gotten really extreme, everything is fair game, his mega blocks, the 4 corners of his fav blanket are drenched constanly. But oh man is he a great eater he will eat anything and everything that mom and i give him, his fav is chipotle.

He is still a wonderfull little guy who really loves his daddy but really noone else. Its very odd but im really the only one thats allowed to pick him up without him pushing off or hitting. He does have a ocupational therapist that comes once a week. But weve really just started with that. Weve only learned about "heavy work" so far. But im puzzled because the doctor nor the lady that evaluated him nor the OT has said autisim yet. In fact the one lady got quite offended when i brought it up. Idk what do you guys think? Why are they so like wierd with me when i ask that question ive heard things like spd but never asd? Hopefully we get some answers because this being left in the dark thing is really bothersome. Im just not sure what to think. Thanks for listening.

Posts: 196
Joined: Sun Aug 17, 2014 5:33 am

Re: Hi guys new here

Postby Santosg » Fri Feb 12, 2016 5:33 am

Hi Drummer,

Welcome to the forum. It is great that you're getting an early start on this important issue. There are a lot of issues related to your situation. The first and most important component, however, is that you can't wait on the pediatrician or therapist to actually guide you to the best treatment. You have to be the advocate of your son's healthcare and well being. The OT won't say autism for many reasons. The first is that they have actually constraints--job wise--with giving any kind of diagnosis. Even when it was obvious that my son had autism, his speech and occupational therapist would not utter the word. They avoid it at all cost and they do so because of regulations directly related to their jobs.

How many words does he say? If he's only saying a few words, such as Dadda, he WILL qualify for speech therapy. The problem is actually getting it. I had this exact problem. So you have to do a few things. Call the regional center that coordinates these services and make an appointment. State how concerned you are and how he needs to have an evaluation for speech therapy and physical therapy. If they give you problems about having 'a backup' or a 'wait list' say that in such cases they are suppose to contract these services to independent providers. In other words, they have NO LEGAL RIGHT to deny these services to your child. There are a ton of laws on your side to get these services, but for those that are ignorant of the laws it is easy to simply push them aside. Don't get aggressive, just be persistent. Speak with a supervisor. You'll see results. If they say 'let me look into this' call back within a few days to find out what's going on.

The pediatrician that you have is just probably some regular country bumpkin kid doc. So they are neither familiar, qualified, or accustomed to give an autism diagnosis. So you're going to ask your doctor to book an appointment with a pediatric neurologist who is qualified to make a diagnosis, as soon as humanly possible. If you are in Ohio, you'll find the right people within the big university or hospitals. These doctors will be able to make an autism diagnosis at a young age. My son got his diagnosis when he was just a few months older than your son.

After the diagnosis, you'll have rights to additional therapy. This might include increased speech therapy and also to receive ABA. ABA is the gold standard in autism intervention and should be your first priority. Honestly, speech therapy is something that has never produces any significant results in my experience. Speech therapist seem to be totally unfamiliar with ABA and also ideologically opposed to a behavioral approach. They want speech to emerge in a more natural setting, which is all good in theory, but obviates the need for intensive intervention in the first place.

Okay: So your first priority: get the appointment with a pediatric neurology that can evaluate a child for autism at a young age, fight for increased services in speech therapy and well as get evaluated for occupational and physical therapy.

Here is the truth: the only time you're really going to get a lot of these services is when your son is very young. By the age of 5, so many of these issues will be simply pushed off into the educational environment. So, getting these is critical NOW. The more help you get him now the better off he and your entire family will be.

Beyond you and your immediate family, no on is probably going to reach out and help transform your childs life. The world does not work that way. So you've got to really battle with everything inside of you to help your child.

Lastly, you should educate yourself on the biomedical approach and locate a DAN doctor. The best way to do this and save on cost is to make the DAN doctor your child's primary care doctor or a doctor that can be referred by your pediatrician to treat 'on label' issues so most of the appointment is covered by your insurance. Even if the DAN is two or three away, provided that they have good reviews, it is a critical factor in your intervention and also saves you a lot of money.

My son's pediatrician is 2 hours from my home and my DAN is 3, but believe it or not the appointments with the DAN are covered by insurance precisely because I found ways to operate within the current system. A lot--all of it--depends on finding the right pediatrician, though. I'd say your current one just isn't cutting it. Find another, ASAP to order routine blood tests and other panels.

You've got a long road ahead of you but it will all be to the benefit of your son. Fight for him. Best of luck.

Return to “Autism Support/Education/Technology”