My son is 2 and is being evaluated for autism. They have scheduled a overnight eeg and a fragile x test which is at the end of Jan. I would like to list his symptoms and get your opinion. He had 3 words he could say 1 year ago, Now he is down to 2. He doesnt understand language at all. He will sometimes say his 2 words bite or mom all day long. He makes babbling gooing noises all day but especially when we go out in public. He doesnt answer or look your way when you call his name. He doesnt follow directions. He does have echolia where he will repeat perfectly what you said but you will never hear him say the word again. He carries a blue bunny with him where ever he goes and will rub its fur between his fingers and stare at it. He has low muscle tone. He has sensory issues. He loves texture anything soft he will rub on his cheek. He waves things in front of his face like a paper towel roll and just stare at it. He tries to spin everything, he loves spinning, especially pot and pan lids. He will shake his head no, posture his hands, walk on tiptoes sometimes, he grimaces his face, puts his index finger and pushes it into his cheek, all of this when he is excited, lonely, bored, tired... etc..For example when we put up the christmas tree he shook his head no, postured his hands and kept trying to push himself into the tree because it was something different he isnt used too. He has to touch my arm and then his dads everytime we eat. He picks up my hand and shows me what he wants sometimes. The only thing that is keeping the doctor from saying autism she said is that he is very social with adults. The problem is he treats every adult like me and his dad. He will go up to anyone to pick him up. In the mall a lady was walking past the stroller and he grabbed her finger and wouldnt let go. Low muscle tone.
I dont know if doctor may be thinking fragile x because of the social aspect but he does have a big head, he has blue eyes and his ears stick out some on top.
There is overlap in the behaviors exhibited by children with fragile x and autism spectrum disorder so it is great that you will get a differential diagnosis. Regardless of the diagnosis I would recommend looking for specialized clinical help. Specifically I would look for a clinician who has certification in Behavior Analysis (BCBA). You can find people in your area of the country who are certified by going to the following website: http://www.bacb.com/consum_frame.html and type in your state. I do not know what services are available in your area but the best outcomes are found with early intensive behavioral intervention. Hopefully your diagnostic team can put you in touch with treament professionals and options.
My son just turned three years old. He has been in O/T, S/T and Play Therapy for 1 1/2 years. He is our 5th child and I knew when he was about 18 mos old that something was not quite right when the words he had learned he could no longer say. He had also started having severe meltdowns, babbling, flapping his hands, echolalia, lining things up, obsessed with blinking lights, ceiling fans, excessive sensory issues, and the list goes on. We had him enrolled in the infant toddler program to receive services, and we had to become strong advocates for him because alot of times we would hear, "Oh, he has excellent eye contact, he is so smart, he smiles, etc. (ad nauseam)." He has now graduated from that program but still receives his therapy services at the clinic, and is eligible for services one day a week through the school district. He has an appt scheduled for next month with a developmental pediatrician. He has made great strides, but now new things are developing, such as aggressive and other inappropriate social behaviors, hyperactivity, etc. I have been advised that even with a "diagnosis" for autism of any sort, his treatment would probably remain the same. It has been a challenge for our entire family, but the results have been amazing nonetheless. With or without a diagnosis, your son should still be referred for some sort of therapy for his symptoms, and be able to start. It will help him tremendously. Search all of your resources, and remember that his parents are his strongest advocates. Stay encouraged.
Thank You so much for the reply. It is hard to go through things like this, its nice to know that you are not alone. I am glad your son is getting so much therapy. I hope I will get the same for my son, there isnt very many services where I live.
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