Study -- PREVENTING autism
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http://seattlepi. Last updated January 2, 2008 7:44 p.m. PT UW launches study to prevent autism PAUL NYHAN <mailto:paulnyhan@seattlepi P-I REPORTER The University of Washington launched one of the nation's first studies on preventing autism in infants Wednesday and will spend the next four years exploring the benefit of intensive and early therapy on the mysterious disorder. The university's Autism Center is now looking for 200 local families to join the study of autism, which is diagnosed in 1 out of 150 children, according to the latest study by the federal Centers for Disease Control and Prevention. The study is unusual because autism research and treatment has typically focused on treating or reversing but not preventing the neurological disorder. Autism often emerges when a child is around 2 years old. "Other research has shown that the earlier the intervention, the better the outcome in treating children with autism. One of our goals is to be able to identify autism as early as possible before obvious symptoms show up so we can intervene while the connections in a child's brain are still plastic," Annette Estes, associate director of the Autism Center, said in a statement. The hope is based on the fact that UW clinicians have generally been more successful the earlier they have treated children. "This is the question we are trying to answer: 'Can we do this?' " Estes said in an interview. "It is a bold question to try to ask." There is wide support for treating, reversing or potentially preventing a disorder that has such a variety of symptoms people are diagnosed on a spectrum. Children with autism typically struggle with social, emotional and communication skills. The study will focus on newborns who have older siblings on the autism spectrum, since those babies are far more likely to develop the disorder. One out of 20 infants with an older brother or sister with autism will also fall on the spectrum, according to the university." think this is the only study I am aware of ... to really identify autism this early, six months or younger," said Estes, who will lead clinical assessments. . Experts don't know what causes autism, though it is believed to be a combination of genetics and environmental triggers, and UW researchers hope to gain a clearer sense of early risk factors. The study is potentially controversial to some because prevention is a loaded word in certain autism circles. There are adults on the autism spectrum who believe autism is a difference, not a disorder, said Kristina Chew, who has an autistic son and runs the popular blog, Autismvox.com <http://Autismvox. "I think the general feeling is being autistic is part of being human," said Chew, who added that treatments described in the release appeared helpful. "If we are going to prevent autism, are we going to start preventing other differences in human beings?" Parents interested in participating in the study can call the UW Autism Center at 800-994-9701 or check depts.washington. <http://depts. Check out the Seattle P-I's parenting blog, Working Dad at blog.seattlepi. reached at 206-448-8145 or paulnyhan@seattlepi Wow, talk about bold -- identifying autism at age 6 months or younger. I remember research by Kennedy Krieger involving 14 month olds, and that was tough enough! I'm not sure if it would be possible or desirable to prevent the difference, which was recently called "highly specialized brain phenomenon" to try and remove the disorder stigma. But I hope that it will be possible to prevent the disorder (problems in functioning), to make it easier to live with this difference. Thanks for sharing the link. Why oh why do so many things about autism have to be controversial? QUOTE "The study is potentially controversial to some because prevention is a loaded word in certain autism circles. There are adults on the autism spectrum who believe autism is a difference, not a disorder, said Kristina Chew, who has an autistic son and runs the popular blog, Autismvox.com <http://Autismvox. "I think the general feeling is being autistic is part of being human," said Chew, who added that treatments described in the release appeared helpful. "If we are going to prevent autism, are we going to start preventing other differences in human beings?"QUOTE I like to think of it also as "a difference, not a disorder", "part of being human". "If we are going to prevent autism, are we going to start preventing other differences in human beings?" OK - THIS REALLY SCARES ME. Granted, I have not checked out her blog yet. But -- if the CDC (or DSMV, or whatever gov.'t agency it is) decides to change their "definition" of autism to a "difference, not a disorder" , there goes the funding, the $ from private ins. co.'s, the schools, the Medicaid and Medicaid Waivers, not to mention the cure that not also everyone wants. That will leave alot of us (NOT ALL) in a much more difficult position than we are already in. Look, I don't want to change my son in terms of his personality or the soul that is inside him - but I do not want him to suffer either. He is totally aware that he cannot speak, has a hard time socializing. I know he wants these things for himself (not for me) because I see it in his face, his actions, his tears of frustration. It seems as though no one side of the spectrum can come together on what it is we want. Perhaps they should go back to the old classifications (or DSMV criteria) and this way there would be much less confusion. Yeah my hand is shaking as I decide whether or not to hit POST REPLY, but I am entitled to my opinions and my boy is entitled to a secure future. Notime, The CDC is not thinking of changing their definition. The American Psychological Association will likely change their criteria when they publish the DSM V in 2011 (or 2012) but it will not mean changing autism to being a difference. While I really appreciate hearing from people who feel this way, I don't think this is the general belief and funding is not going to be cut for therapies for that reason. It might be cut for other reasons, but I hope not! I guess this study kind of befuddles me. I'm wondering how they are going to diagnose and how they are going to treat? And 200 seems like a small number to me, given the odds are currently 1 in 150 (although probably at least a little lower, in my opinion). I am interested to see what happens with this... Thanks for posting about this tzoya! As parents that want to give our children a easier life with autism I would be the first one to sign on if I had known my dd had autism at birth...I absolutely believe that the earlier we can detect autism the better we can reverse the negative effects of it...such as eye contact, engaging people and language..sib behaviors..ect... The future & prognoses of newly diagnosed kids can be dramatically different than it is now I feel. IMHO earlier the treatment the better the outcome:) I love my dd with all my heart and soul and if I can prevent her from suffering from the harsh reality that her peers are going to treat her differently than I am going to do what I can to help her. Unfortunately our kids are big targets for being bullied and outcasted and my child can already feel rejection at her tender age. I cant even think about middle school:( I know many parents would of started therapy much earlier if they had known and wasnt given the "wait and see" approach given to them. Imagine if you had known at birth or right after...what would you have done differently? The sample number of 200 isn't actually all that small since it involves siblings of children with autism, who will have a much higher risk than the 1 in 150 in the general population. If I lived in near the University of Washington and had an infant, I would sign up for the study in a heartbeat. For me it is completely uncontroversial to try and promote a positive social development -- while still expecting that differences are respected and necessary accommodations are made. Snoop, I pray you are right. I was told (by an Autism advocate from Washington) that of all the "disabilities", autism has the least amount of funding set aside by gov't. Ok, this was about 2 years ago, so it may not be true now - but it still scares me. Especially if there is a group of people who are complacent with it ("just a difference") and that group (or Ms. Chew) is the one person picked out by a (newspaper?) to be quoted. I'd rest alot easier if someone like ShellyR was quoted. For the record, I think this study is a wonderful undertaking and hope they are successful in their efforts to helping future generations. My first (and probably only) post here. I have no connection to Autism other than my sons helping out with Surfer's Healing (http://surfershealing.org/ - a free program established by an Autistic's father), nor do I have any special knowledge or experience on Autism. (All that said so I don't mislead anyone.) As I understand it, Autism is, at least on some level, a sensory overload to the brain. After encountering a couple in an airport (We had struck up a conversation where I explained the Surfer's Healing program) with a 9 yro autistic who became excited it occurred to me that in circumstances where a person's senses become overloaded, it might be helpful to limit the sensory input. Examples that come to mind are the hooding of falcons, blinders on horses to limit their peripheral vision. Poor examples using animals, I know, but all I can think of. The couple above gave their child two Tylenol PM for the plane ride to help quiet him. That seems to me to be a type of sensory reduction as well. Please don't anyone be offended. I certainly meant none. It's just a thought put out for any value it may have. Good luck you all.
[QUOTE=Notime]Why oh why do so many things about autism have to be controversial? QUOTE "The study is potentially controversial to some because prevention is a loaded word in certain autism circles. There are adults on the autism spectrum who believe autism is a difference, not a disorder, said Kristina Chew, who has an autistic son and runs the popular blog, Autismvox.com <http://Autismvox. "I think the general feeling is being autistic is part of being human," said Chew, who added that treatments described in the release appeared helpful. "If we are going to prevent autism, are we going to start preventing other differences in human beings?"QUOTE I like to think of it also as "a difference, not a disorder", "part of being human". "If we are going to prevent autism, are we going to start preventing other differences in human beings?" OK - THIS REALLY SCARES ME. Granted, I have not checked out her blog yet. But -- if the CDC (or DSMV, or whatever gov.'t agency it is) decides to change their "definition" of autism to a "difference, not a disorder" , there goes the funding, the $ from private ins. co.'s, the schools, the Medicaid and Medicaid Waivers, not to mention the cure that not also everyone wants. That will leave alot of us (NOT ALL) in a much more difficult position than we are already in. Look, I don't want to change my son in terms of his personality or the soul that is inside him - but I do not want him to suffer either. He is totally aware that he cannot speak, has a hard time socializing. I know he wants these things for himself (not for me) because I see it in his face, his actions, his tears of frustration. It seems as though no one side of the spectrum can come together on what it is we want. Perhaps they should go back to the old classifications (or DSMV criteria) and this way there would be much less confusion. Yeah my hand is shaking as I decide whether or not to hit POST REPLY, but I am entitled to my opinions and my boy is entitled to a secure future. [/QUOTE] While I may not agree completely...I agree that I wouldn't want my child to suffer either...while a lot don't see a cure as a beneficial thing - I want to give my child the benefit of "fitting in"...and as this will probably draw fire I will state that if I found out I was pregnant with another ASD child and reversing that were indeed possible or being able to detect it - I would WANT to know and I would do it! [QUOTE=Swede] My first (and probably only) post here. I have no connection to Autism other than my sons helping out with Surfer's Healing (http://surfershealing.org/ - a free program established by an Autistic's father), nor do I have any special knowledge or experience on Autism. (All that said so I don't mislead anyone.) As I understand it, Autism is, at least on some level, a sensory overload to the brain. After encountering a couple in an airport (We had struck up a conversation where I explained the Surfer's Healing program) with a 9 yro autistic who became excited it occurred to me that in circumstances where a person's senses become overloaded, it might be helpful to limit the sensory input. Examples that come to mind are the hooding of falcons, blinders on horses to limit their peripheral vision. Poor examples using animals, I know, but all I can think of. The couple above gave their child two Tylenol PM for the plane ride to help quiet him. That seems to me to be a type of sensory reduction as well. Please don't anyone be offended. I certainly meant none. It's just a thought put out for any value it may have. Good luck you all. [/QUOTE] Why be offended? I think most of us will agree (pardon me if I am putting words in mouths) but at least dh & I AGREE that autism is some what sensory or we wouldn't try to block some senses while others are bombarded. Thanks and you are welcome to post. Notime, When a newspaper is publishing about a study, if there is someone who is opposed to it - you can bet the newspaper will quote them. It stirs more people up and sells more papers. Sorry to be so cynical here! While I VERY much respect people who have autism and are speaking up and saying they don't want to be cured - they are in the very tiny minority at this point. That is not to say that their viewpoint should not be discussed or that it should be dismissed. But at this point, it is not likely to affect funding. Autism awareness and funding are increasing dramatically because of all the efforts by multiple organizations. You didn't hear much about autism 6 1/2 years ago when my ds was born (at least I didn't) - but man, lots more people know now! And Congress has passed some huge appropriation bills as well. The unfortunate thing is that more and more kids are being diagnosed - so the money coming in isn't keeping up with the numbers of kids being diagnosed. So, it doesn't seem like the money is more... For the most part, we live in a society that tries to make sure that the people in it are living up to their potential and are being as productive a member of society as they can be. Okay, I'm an idealist! But, I think that's the mind-set that most people have - whether or not they provide the funding/resources to make that happen? Well, that's a whole other story! But, with that mindset I don't think that funding for therapies would be cut as most of us hope that those therapies will help our kids be able to live up to whatever potential they have. Okay I'm kinda rambling here - hope this makes a tiny bit of sense! My reaction to Notime's post was similar to Snoop's ... but, my focus was the economics. I sincerely doubt we as a society can afford to keep the majority of autistic kids out of the public education system. And all of society is paying for the education of these kids -- including, heaven knows, my own -- to get them capable of participating in society productively. I honor individualism, I truly do -- but we must have some way of helping kids do that. And unless you can afford to support your child for life, and/or educate him independently, so must you. Wow! What an idea! Amazing article Tzoya! I always wondered what factors and to what degree they had on causing ASD's in people. This is such a potentailly huge project, with something occuring on almost epidemic levels it would be awsome to isolate and determine those variables so hopefully future parents can maby attempt to avoid them.I for one, while I feel certain skills associated with my ASD like organization, planning and decent with numbers have actually given me an advantage in life over my peers at this point in time, I made very good investments over the years and planned very long term goals, I dont see this in really any of my friends over the years and others I run into my age. Seems many my age are eather dating or just kinda floating thru life taken it one day at a time, how they can not stress about that is beyone me, or live like that. Anyways to get to my point (always sorry for the insanely long text) While I do good or even better now, things change when people get in their 30's and 40's. Life goes in steps and I feel my ASD presents the real possibility that I will never advance in life beyond the point I have reached now, all my other peers will of course many will have advanced in career and family. I know what I ultimatly want in life, but realize itll never go according to plan 100%. This is a horrible feeling really, I think about it alot, the real possibility Ill be doing the same work 10 years from now with no hope for serious advancement or ultimatly failing at any relationship beyond just friends in the end. All I can say is I would never want any of my future kids (again... only marktly possible) to ever have to think and feel like that, planning contingencies in the event the real things that matter in life for most people in my similar situation, may never come. I am happy and have done well now, but in 10 years if I am exactly where I am now, I will not be happy with that at all. If this can be prevented in future generations that would be great.[QUOTE=NorwayMom] If I lived in near the University of Washington and had an infant, I would sign up for the study in a heartbeat. For me it is completely uncontroversial to try and promote a positive social development -- while still expecting that differences are respected and necessary accommodations are made. [/QUOTE] Amen to that! Great article--that is exciting. I'm very interested in the outcomes. I think we need to do so much more research now, now, now! I agree with Norway - I would sign up for it too if I had an infant and lived in that area. Anthony has done so well with ABA and speech therapy. He started speech therapy around 3 yo and ABA two months before his 4th birthday. He's done so well, he likely won't qualify for special ed services when he is reevaluated. With that said, I can't imagine how much more progress we would have seen if he was getting therapy at 6 months old. We live 1 hour away from the U of W. But I don't have any babies anymore!
This NY Times article gives some more details on the study. "All of the babies recruited for the study will be monitored by specialists and evaluated at the ages of 6, 12 and 24 months. But half the mothers in the study will be coached in a unique intervention that trains them to detect subtle communication cues from their babies. The mothers will be taught how to take advantage of periods when their children are reaching out, engaging infants in eye contact and communicating with them in a lilting voice that captures attention and may make it easier for kids to learn language." "The idea is that coos, lilting speech, eye contact and other interaction will reinforce the development of the babies’ social interaction, and hopefully prevent or reduce the deficits that can later occur in children who develop autism. Behavioral and speech therapists will also be assigned to babies who start to develop signs of autism to determine if early intervention can lessen or eliminate symptoms." Here's the link to the entire article: http://well.blogs.nytimes.com/2008/01/03/hoping-coos-and-eye -contact-can-thwart-autism/ Surfers rock, and I just love that your family does this for ours!!! Thank you! This study seems focused on communication and socialization, not the sensory aspect, which really ought to be brought in. The only thing that does suggest sensory is this sentence: The mothers will be taught how to take advantage of periods when their children are reaching out. Many of you here know that our son was 14 weeks premature and weighed a bit over one pound at birth. Parents of micro-preemies are taught about "quiet, alert states" as being the times to interact with them, and we are taught about watching their hands for splayed fingers (sign of overload), heads turned away, then fencers stance (one knee up, that same side's arm bent up, and head turned in that direction), etc. Nobody said the words "sensory integration", but we did learn a lot about swaddling, quiet rooms, etc. One of the reasons it took myriad experts ages to diagnose Cole is that his symptoms are both those of a micro preemie AND a kid on the spectrum. Cole got OT and PT once a week since he was about 8 pounds, he got speech assessments every 6 months (we started therapy at 12 months), and we even started special instruction when he was around 5 months (in adjusted age...he was really 8 months out of the hatch). Where I'm slowly going here is - I got personally trained by these therapists, retired from my career so I could do this stuff with him off and on all day, and since we were clients, I asked the gals to bring us homework to work on every single week. Am wondering how much worse off our son would be if I hadn't done all this? I would love to see the homework or syllabus for this study to see if its mostly the same stuff that I forced out of the therapists. They normally don't give handouts and hit lists, but THANK GOD they were willing! |
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