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Navigating Autism Information

Learn how to navigate the maze of information regarding autism from pediatrician and child development expert Asma J. Sadiq, M.D. in this Howcast video.

Transcript

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So how can a parent navigate the maze of information that's now available on autism? I would break it down on areas of intervention, in the sense that you work with diagnosis, and looking at the medical piece of it as one area that you need more information on, then you look at the therapeutic modalities, and then you look at the research. I would go initially to your primary physician, and go to therapeutic sites that you have through the CDC as well as the American Academy of Pediatrics. You build up on that with information that is there with parent support groups. I think, you know, there are many autism groups that have been set up by parents that offer a lot of emotional support, a lot of information, and a lot of controversial information as well, where some parents will be saying something completely opposite to another. But it is important to hear both sides of it.

However, go back to your pediatrician; go back to a support that you have to check the information out. Getting onto different websites, one really needs to be navigating that process. And there are some more reputed ones than others. I don't want to get into labeling beyond the ones that I have mentioned. But there are many sites that at are out there; however, look at two sides of it, definitely go back and look at the research and what is being stated. Keep up with the research. Get to some of the medical centers that have particular excellence with autism research. Follow that, but you do that in stages. Initially, you're going to have to deal with the diagnosis, what else you can do for your child from the medical point of view and from the evaluation point of view. Then you’re looking at the school systems and the different services that are available. It's like buying a car. I’m giving you not quite, but you need to be an informed consumer, is what I'm trying to say.

You need to get information and be able to process it in a way that you can use it and digest it and get it verified. So you’re going from diagnosis to educational interventions to behavioral interventions to different therapies that are approved, and some that are being researched, and some that are quite out there, but there are some parents that are claiming that it's beneficial. I would keep your eyes and ears open, but keep a level of caution, because something that may be benefiting one child may not be benefiting your child. And when you do have a story, it is absolutely fair to share it. I do agree with parents supporting and helping and guiding and navigating each other, but do it with consensus and support of the medical community or the professionals and experts involved. And absolutely look at how many people are saying the same thing, whether the hypothesis is correct for you.

One of the sites that I do like because it is a research site and it is being developed called Autism360, where parents use it like their own passport. They put in their child's symptoms and put in the interventions they used, whether it was diets, supplements, medication, and this helps us differentiate the subtypes. This was something developed by Dr. Sid Baker and this is your information. You have a password and a code word that you then share with your practitioner, whether you go from one pediatrician to a specialist or to somebody else. This is information on your child, which you have put in, but it's available for research and for helping the researcher, or the group of researchers look at the subtypes, and possibly guide you on for what would be beneficial for that particular subtype.

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