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Thread: Study recommends against autism screening

  1. #1
    Administrator Islander's Avatar
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    Default Study recommends against autism screening

    By Frederik Joelving
    NEW YORK | Mon Jun 13, 2011 3:03am EDT

    (Reuters Health) - There is no solid evidence to support screening toddlers for autism, a new study concludes.
    It's estimated that autism spectrum disorders, which range from mild Asperger's Syndrome to severe mental retardation and social disability, affect nearly one percent of kids in the U.S., putting a significant burden on families and society at large.
    Both the American Academy of Pediatrics and the U.S. Centers for Disease Control and Prevention encourage routine screening for the disorders.
    But the new report, a review of the medical literature, suggests those recommendations are premature.
    "We don't have research evidence to show how well screening works and whether we do more good than harm," Dr. Jan Willem Gorter, a pediatrician at McMaster University in Hamilton, Canada, told Reuters Health.

    Read more: http://www.reuters.com/article/2011/...e=ushealth1100

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    Veteran Member mellowsong's Avatar
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    Default Re: Study recommends against autism screening

    In 1981, I had a child who was definitely different, developmentally delayed and screamed 24/7. She never slept. I knew something was wrong. I've spoken about her before. Due to various miracles, we actually got seen by an extremely rare specialist (infant neuro-psychiatrist) and received a diagnosis of probable autism when she was 7 months old. Because of this early diagnosis, she was accepted into an experimental early intervention program when we were in Germany. She was 2 1/2, the other kids were 6 and older. Although not free of all signs of autism, she is married with 2 children and is an excellent mom. I've also been actively involved in groups like GAPS and other nutrition groups dedicated to healing. The earlier a child gets a diagnosis and the right kind of early intervention, the better they do. So, I totally disagree with the findings of this article! In a perfect world, the kids would be screened early and referred for the right interventions AND be put on diets like GAPS. Early intervention and diet WORKS. I was told to put her in an institution, that I could never take care of her.

    I know I'm dreaming. I knew nothing about food and gluten when I had my daughter. What I did realize by the time she was 1 was that I could somewhat predict behavior based on what I had eaten while breastfeeding and what she ate after I stopped. Through trial and error she ended up spending 3 years on nothing but rice, green beans and chicken. Any deviation (of course birthdays and stuff) exacted a huge price.

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    Default Re: Study recommends against autism screening

    What is so desperately needed is more of the specialists like the one who saw your daughter...or the one who diagnosed and treated Temple Grandin.

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    Veteran Member mellowsong's Avatar
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    Default Re: Study recommends against autism screening

    Quote Originally Posted by Islander View Post
    What is so desperately needed is more of the specialists like the one who saw your daughter...or the one who diagnosed and treated Temple Grandin.
    Very valid point!!! On top of the diagnosis, appropriate treatment is essential.

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    Default Re: Study recommends against autism screening

    Mellow, would it be possible to share some of the points of the early treatment your daughter received?

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    Veteran Member mellowsong's Avatar
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    Default Re: Study recommends against autism screening

    Quote Originally Posted by Pattypans View Post
    Mellow, would it be possible to share some of the points of the early treatment your daughter received?
    I'll try to make a long story short but: Once we got to Germany, things spiraled out of control with her behavior and with my ex's ability to cope. The clinic commander actually ordered the day care center to take her one morning a week to give me a break and let me volunteer at my older daughter's preschool but after a few times, they refused to take her back saying she was too disruptive. We got referred to a doctor at a nearby Army base who happened to be starting an experimental early intervention program. His initial criteria was that a child had to be between 4 and 8, have a diagnosis of autism or retardation. However, he was friends with the clinic commander where my ex was and decided it would be interesting to see how a 2 y/o progressed vs the older kids so he put her in the program.

    The kids met 3X/week for 3 hours. They were in a huge room with lots of play equipment but the activities were gently guided and included physical, occupational and speech therapy. I want to say there were about 8 kids in the group from Val at 2 1/2 to the oldest boy, 8. While the kids met, other therapists met with the parents and taught us the skills they were using in the group so that all these things could be continued at home between groups.

    Initially my daughter went for maybe 5 minutes because she melted down the second I let go of her hand. Of course, her screaming was intolerable to the other kids and to the therapists so they didn't allow her to stay in there very long. Gradually though, she lasted longer and longer before the melt downs. After about 4 months, she was actually able to stay in the group the entire 3 hours. By 9 months in, although she was the youngest by at least 2 years, she was the leader. After 15 to 18 months (don't remember exactly) the program was discontinued. Toward the end we did start putting her in the day care again just to see and it wasn't as bad. Nobody had been able to potty train her but one day, when 2 of her friends got moved up to another room because they were potty trained, she came home and said "no more diapers". That was the end of diapers...not of all accidents but.... When the program ended he told us that her progress was incredible and unexpected and he was now going to be recommending intervention very early. He felt we should try her in the preschool on base and see how it went.

    Some things we did: Various exercises that worked on fine motor skills but weren't structured or forced but more like play such as placing pegs, shape sorters, some coloring, things like that. Then there were balance exercises such as balancing on her belly on a ball, walking on a line. For speech, we cut pictures out of magazines and made "books". She pretty much decided on the pics, we would paste them on a page then work on the word until she could actually say it. Sometimes it took an hour sometimes days. Other simple things like not responding unless she spoke rather than pointed or screamed, making a game out of repeating words. It was so long ago, it's really hard to remember specifics but one thing that was stressed was that it was all to be play, not forced. We spent hours and hours at home doing the same things but each "session" might only last 2 or 3 minutes. I got my other daughter (22 months older) involved too so that she didn't feel left out.

    At the same time, we stuck pretty rigidly to the chicken, green beans and rice. Of course back then I knew nothing about gluten or food sensitivities or damaged guts. I just knew that most food pushed her over the edge so narrowed it down to what I was sure she tolerated. When I had to quit breast feeding because I was put on an antibiotic dangerous to children, all hell broke loose. She was about 6 months old. She'd gotten a little formula here and there but not much. She threw up fairly often but once she was on formula, she threw up all the time. I spent my days cleaning her up and re-feeding her. When she still didn't tolerate a predigested protein formula, I took things into my own hands and stopped all formula/dairy. For calcium we gave her these fizzy tablets they had that dissolved in water and tasted like sprite and added vitamins and iron to the drink. That's also when I started experimenting with foods. She stayed on this regimen from 1 y/o til she started preschool at 4. At that point, not knowing any better, the teacher convinced me to try a regular diet for her, that she didn't need to feel even more different. Honestly she didn't really regress that much when foods were added back in. On the other hand, food was a lot purer back then too. The doctor was aware of her diet while she was in the program...but nobody thought of diet in terms of autism...she just was sensitive to foods.

    By the time she started pre school at 4 she was not "normal" but definitely functional. We had to go through the same process of her just staying in the class room a few minutes and working up. Again it took a few months for her to be able to stay the whole time.
    Age 2 before the program:
    Nobody but me could touch her. Even when I held her she was either a rag doll or extremely rigid. Even her dad could not hold her...any time he touched her, it resulted in screaming. Actually she behaved better with our dog than with any person in her life. Max seemed to understand that.
    Rarely played with other children including her sister. Even before the program though, with the diet changes, this was changing...as long as I was in the room.
    Anything and everything caused a melt down and most of the time we didn't know what the trigger was. Once started there was no calming her. We had to wait until she tired herself out so bad she crashed. This going on for 24 hours non-stop was not unusual, especially between the ages of birth to 18 months.
    She didn't speak...part of it was hearing due to fluid and multiple ear infections; part of it was not connecting speaking to results.
    She could spend hours picking at the carpet or staring at a window but was rarely interested in toys. She wasn't really interested in TV or cartoons.
    She was extremely clumsy, falling all the time, getting hurt. She broke her wrist at 2 y/o falling on a tile floor. She had no fine motor skills; couldn't color, hold a crayon etc. Actually her printing/writing never really became legible and still isn't.

    After the program:
    She could interact with other kids and other adults. Introductions had to be slow and gradual. She was still pretty much a loner but could cope with being around others and me not there.
    She could speak intelligibly.
    She actually would play with toys and with her sister and with the kids in the group, day care and then preschool.
    She was reading at age 4
    Although still clumsy, she was no longer so bad she was injuring herself so bad.

    After all this a brilliant neurologist told us that the initial diagnosis of autism had to have been wrong, that she "had some wires crossed and now they were uncrossed". I believed that until maybe 5 years ago when I started hearing about Asperger's and realized she really was autistic and always had been. Gosh I wrote a book, sorry

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    Veteran Member Reesacat's Avatar
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    Default Re: Study recommends against autism screening

    Mellow-that is an amazing story of your courage and tenacity in the fight to help your child. I am honored to call you my friend.

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    Default Re: Study recommends against autism screening

    Wow. What Reesacat said so well!

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    Default Re: Study recommends against autism screening

    What a great story mellow. Your daughter is very lucky to have you as a Mum.

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    Default Re: Study recommends against autism screening

    What a wonderful story of endurance, resiliency, and love!

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    Veteran Member Katee's Avatar
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    Default Re: Study recommends against autism screening

    All that was said above and more. She is fortunate to have you as her mama.

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    Default Re: Study recommends against autism screening

    First, Mellow, thank you so much for taking the time and effort to answer my question so thoroughly. I can't tell you how much I appreciate it. And one of my reactions was like Reesacat's--what a wise and wonderful mother you were and are! I'm so happy you found, and supplied, what your daughter needed. God bless you and her.

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    Veteran Member highlander's Avatar
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    Default Re: Study recommends against autism screening

    As we say at our house: Wow, you're going to get big wings!

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    Veteran Member mellowsong's Avatar
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    Default Re: Study recommends against autism screening

    Gosh thanks y'all. I know that every one of you, faced with a similar situation would have done the same things! I was very blessed to have gotten the early diagnosis and although my ex beating her was what got her in the program, the program itself was a major blessing.

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