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Tell Us Your Story! - Looking for WebMD Real Autism Stories
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Elizabeth_WebMD_Staff posted:
We are looking for members to share their family's Autism story with us. Tell us about your family - your struggles and your triumphs when having a diagnosis on the Autism Spectrum.

Your story may be featured on our WebMD Pulse Blog. See the below link for a Real Story from our Heart Disease Community.

WebMD Real Stories: Sydnie's Heart, Part 1

Write and email your story to CommunityManagement@webmd.net

Looking forward to hearing from you,
Elizabeth
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GPamB responded:
I am a grandmother and noticed on different occasional lengthy visits that my grandson now three years of age is unable to communicate in very few words what he wants nor able to respond to a smiple direct question for his age, ; he does echolalia snd chatters. Sometimes if you listen, I mean incline your ear, you can make out a few words trying his hardest for a two word sentence. He has a temper and gets fustrated when someone cannot understand what he is sayingand he does a shiver shake he is fustrated. This concerns me as a grandparent. I ran onto an article in the Newsweek magazine my Mother subscribes to with an article about a little boy who had the nearly all the same developmental challenges as my granson except the child in article has physical weakness and my grandson is very strong and has always been very strong since 3 months on. I gave the article to my daughter but she is apprehensive to share with her husband and household they live in with her in-laws. I, also, suggested she take him to the doctor to possibly be tested for and perhaps they could make some suggestions to her for learning aids. I am not sure she will follow thru with that suggestion. I would like more information on hyperplexia autism. I know it is a high-functioning type of austism. This would enable me to help my daughter to help teach him or communicate more effectively. He knows his abc"s since age 2 can count the numbers on the clock and in squence and he recognizes them on anything since age 2, he has been aligning blocks in a row or by color and his shoes in his bedroom by size since age 18 months and mastered puzzles for age 3 and at age 3 mastered puzzles of 30 count does once redoes within 5 minutes then discards as bored with as already accomplished. He has fixations yes, like Thomas the train and trains and said to me while loading the dishwasher studied the rack rolling back and forth. He said for first time "Grandma wheels," points and then, "tracks." So, he has associated how a train runs on tracks so does dishwasher rack. I discovered he can sight read some words such as pizza, baby and comprehends what those words. I would appreciate any suggestions on how to help him. My son also has two boys, one with mild asbergers age 13 1/2 and one with ADHD age 9. My daughter and my son are half brother and sister. These are the first in the family noted with autism.
Sincerely,
GrandmaB
 
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annette0844 replied to GPamB's response:
Grandma B.
I am also a Grandma of identical twin boys who will be 5 in 2 days. There was no history in our family either and although the boy were born early (they were 7 week premies) they did meet their milestones, usually at the upper end and seemed very typical happy babies until they had their last MMR vaccination. (Please note - I am not against vaccination, just the schedule it is usually delivered on - but that is another email) The boys immediately started to lose their language, eye contact etc and by age 18 months were diagnosed with Autism after a comprehensive battery of tests. We had to rigorously insist they be tested. We started around them being 16 months old.

I found an autism physician (DAN doctor) on line who started them on Methyl B-12 subcutaneous injection every 3 days. We did this after he had done a number of blood test, heavy metal tests etc. As a side note the boys did not have high levels of mercury, but had extremely high levels of aluminum and tin (aluminum is found in most vaccines as an adjunct to increase the reaction of the vaccine). We aggressively started them on Methyl B-12, changing nothing else for 6 weeks. It was amazing to start to see within a few days the changes in them. Please note that it is not a miracle cure, but an adjunct. I should also mention that I am a nurse and as such did extensive reading on the B-12, looking for possible side effects, as well as possible research validity for using it before we even gave them one injection. I could find no downside for doing this. We then started them on a gluten free and casien free diet, removing all casein (milk & soy products) first and reducing the gluten gradually as we used up the cereals etc we had and replaced them with gf products.
We also began intensive ABA - each boy had 7 hours per week along with 1 hour of speech, We continued the lessons throughout the day as we interacted with them. When they were 3 they entered a integrated pre -K class and are finishing next month. They will be going to a traditional kindergarten class in the fall and at their last evaluation the Autism diagnosis is gone. They are happy, social, wonderfully typical kids. We still keep them casein free, and limit their gluten to the weekdays giving them some on the weekends and about 18 months ago added soy without any problem. Of course continue with the Methyl- B 12 and their other vitamins.

I don't know if the course we chose will work for everyone, but I can tell you as I watch them being rambunctious boys and listen to their happy typical chatter, that every time they are talking and asking question so much and you want to tell them to be quiet, I clamp my lips closed and just smile and enjoy it.
I hope you find the answer that will work for your grandson, please know that there is hope out there if you are willing to put the effort in it. It may sound as if this was easy, it was not and took a great deal of patience and researching, as well as constant reinforcement of what the children were learning, but it is so well worth it.
Annette
 
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GPamB replied to annette0844's response:
Thank you so much for your support thru your experience and the information; it was very helpful! I will pass on this information on to my daughter. Sincerely GPamB
 
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tghloud420 responded:
My five year old son was recently diagnosed with autism i guess in the "middle of the spectrum"- not quite sure what that even means his dadand i are reeling from this diagnosis and now i ind myself pouring thru info on the nte thats confusing and battling with my school systenm to accept him into regular kindergarten-thats our story for now taking it day by day
 
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MarileaH responded:
Our son is 45 and we have dealt with his problems since he was about 2 years old. Back then, the doctors didn't know about the different spectrum disorders of Autism and we had no clue ourselves, so it's been a huge challenge dealing with him. He's been a challenge for everyone. Until we heard about MMR vaccinations, etc. with high levels of mercury (which he had in 1967) we had not realized how many symptoms of autism our son, Jeffrey had. He's been in special classes in school and goes to a sheltered workshop. We tried a group home, but because they wanted to medicate his behaviors away and they made him so much worse, after 5 years they were no longer willing to keep him, so he's been back home since 2005. He always loved to spin things as a young child, loved the washer (watching it spin) and would never look people in the eye. His verbal skills became non-existant until he started talking again at 3 years old. He has speech problems, but an excellent vocabulary and interact with "normal" people the best. He's been with persons with Down's Syndrome and other disabilities but never interacted with them as well. He can never live on his own. He's always been impulsive and now as an older person (and being on just about every psychotropic drug in the group home, against our wishes) has OCD and much anxiety, which makes it even harder on us. His only alternative at this point is to be institutionalized and there's no way we could do that to him! He has so much potential and even though he's immature and has short term memory problems, is very intelligent in many ways. He learned to read at about 10 with a wonderful program in a mitlitary based school and reads quite well. He loves to tease and can take it to extremes. He has compassion but can also act like he doesn't. Every day has been a challenge with him, but he's done so much better than we excpected over all. He doesn't have close friends - he's closer to our friends who treat him like an equal. Life is very challenging with him, but we keep on perservering as best we can.
 
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autismhero responded:
It seems after my research that a recipe has been created over 30 years ago to induce and deliberately create the climax of Autism diagnoses we see today at 1 in 110 children being diagnose with autism today. My facts are actuarial and the proof is without any doubt what so ever. This of course may have been done by accident. My sons Autism story is probably the most horrible you can imagine on how and why my son is Autism today, and the American people will determine that once they hear the facts and read my book. At the moment you have many opinions of doctors looking to make their purse bigger than what it is, and they are lucky that my purse to too small to publish the truth. Fact is that 75% of children today being diagnose with Autism should have never been diagnose with Autism due to this creation. To be continue.........
 
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GPamB replied to tghloud420's response:
I read your respond concerning education for your child. Since learning about my grandson's diagnosis of hyperlexia. I have found sveral articles frome newsweek to reader's diagest and scientific magazines researching on the internet that home schooling is best for this particular autistic syendrome. My daughter is ultilizing uTube for some of his schooling; their are several programs out there on-line that also include field trips so they get the social interaction with other children. I hope this note is of some value to you. And the glutin free diet is helping to improve. Sincerely GPamB


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