Where Do You Look for Information About Autism?
Monday November 17, 2008
In theory, parents should seek medical advice from doctors, and from websites, books and lectures recommended by medical professionals. But autism isn't a strictly medical condition. In fact, it permeates every part of daily life - from finances to school to leisure activities.
And information about autism is available everywhere. Check out Us Magazine, Oprah, Days of Our Lives, or friends and neighbors hanging out at the local playground, and you'll find plenty of "autism experts."
Where do you turn when you're looking for information about autism? Do you stick with medical advice? Or do you explore further? Vote in the poll! You can click on as many sources as are relevant to you.
Comments
Although I do think the best information about a medical condition comes from physicians and medical literature, from personal experience I have found that certain websites and online support groups seem to give me more information, as well as books. My son’s pediatrician doesn’t tell me anything more about his autism than I already know and readily admits that her knowledge is limited in this regard. My son goes to a developmental specialist as well, but these visits are few and far between as he is high functioning.
Another wonderful source of information for us was when my son went to a special needs preschool when he was diagnosed last year. They were wonderful with him and showed us as parents how to deal with his tantrums and aggression. My son is now in kindergarten and still has contact with the preschool when they have questions on how to handle something.
Paula
My sister, who is one of the most intelligent people I know, has an autistic son who is 13 years older than my own son. She has been one of the three main sources of information for me. My son, who is 8 years old now, had an early intervention teacher when he was 2 years old. She has stood by us, acting as an advocate and advisor, attending all his IEP meetings, arguing with teachers and principals, checking schools, therapists and various services, mostly because she likes my son and is a wonderful person. A third important source of information is my free subscription to “google news alert for autism”. The google news alert provides a daily report of all news articles relating to autism from around the world. The brief abstract allows me to know if the article is pertinent enough for me to click on and read.
The doctors I have seen for my daughter have had limited understanding or information regarding autism. I have learned quite a bit from other parents that have been raising children with autism a lot longer than me, and most especially from adults living with autism that are writing about it online and in books. Their insight has been invaluable.
Misinformation about autism is available everywhere. Check out Us Magazine, Oprah, and AgeOfAutism.com. Or better yet, don’t.
Better to listen to your pediatrician, child psychiatrist or other evidence-based provider.
AutismNewsBeat’s comment made me think more about mine.
I guess it depends on what you mean by “information.” If you mean learning about the disorder in detail and how it affects my child and how it affects the way we parent, then I look to adults with autism that have been able to express themselves in any form, or parents that have spent years understanding the disorder in their children, to understand autism and my daughter more completely. I really don’t think many of the experts out there understand autism in a way that has helped me be a better parent.
If you’re referring to treatment and therapy as far as “information” goes, then I do listen and refer to my child’s doctor, developmental pediatrician and the therapists that work with her. I listen to the experiences of other families, but only so far as to see what’s worked, when and why so I can talk to our doctor more about anything we might be missing that could help our daughter.
Seeing the results of the poll so far, I notice that pediatricians are the LEAST popular resource for responders. I’m guessing that’s because general pediatric practitioners have little direct and specific education relative to autism - certainly much less than do specialists in the field.
But even specialists and “official” websites (CDC, NIH) and autism specialists, according to this poll, are LESS popular as sources of autism information than the general media.
Not that this poll can be considered a scientific survey, but still - it does take me a bit by surprise!
Lisa (autism guide)
I found that The New England Center for Children (www.NECC.org), a school for autism located 20 miles west of Boston in Southborough, Massachusetts was very helpful. They have been around for about 30 years and are a private, nonprofit autism education center dedicated to bringing out human potential and creating productive lives for children with autism. Since 1975, they have remained true to their original mission: providing state-of-the-art autism education and individualized treatment for children with autism spectrum disorder, pervasive developmental disorder (PDD), and Asperger’s Syndrome.
Why not travel to their site and see if the information there helps.
www.necc.org
I initially went to my pediatricians about my son’s speech delays. His first ped (Rhode Island) was concerned and wanted him to see a speech pathologist if he hadn’t said boo around 25 months. Unfortunately, we moved to California before his next appointment with her.
It was the California peds who told me he was just delayed because he was a boy. It didn’t matter how insistent I was that they do more for him, I still received the same answer.
When he still wasn’t speaking in dialogue at almost age 4, I spoke with his godmother who also has a son on the spectrum.
I followed her recommendation to have him evaluated by the school psychologist of our school district even though he was not an enrolled student.
I realize not all pediatricians are as dismissive as the ones I dealt with, but my story is also not unique.
If a parent wants to know more, I think they should look everywhere for answers.
Adonya Wong
Author | Autism Activist | Blogger
When my child was a year old, I told his Pediatrician that he didn’t have any words. I kept making the same complaint for the next six months and finally he wrote a telephone number on a piece of paper and told us to call. The phone number was for a neurologist which lead to a diagnosis of autism and early intervention. Since then, the Pediatrician has not spoken to us about the autism and confines himself to more conventional problems. We went to see a Developmental Pediatrician when my son was six years old. He told us that my son was autistic, something that we had already known for four years. He went on to tell us that we would get much more information from other parents. The best source of information is from experienced therapists and parents.
The British autism researcher Simon Baron-Cohen, his writings, his website. His term “Mindblind” conveys so much, and I find helps people who’ve not encountered autism “get it” quickly.
I have a son with high functioning autism and I agree they need to be with peers their age so they may learn to interact. What is so frustrating to me and my fellow Septa Co-president is the unwillingness of our district powers that be to institute a “lunch buddy” program or peer mentoringprogram just for these kids to practice their conversation skills and how to even join in a conversation appropriately. Any Ideas?????