An Unofficial Vote of No Confidence in Pediatricians from the Autism Community
Of course, About.com polls are not scientific. Anyone can vote, and anyone can vote more than once. There's no randomization - which means it's possible the poll is being thumped by some person or group unknown.
But assuming that readers are randomly finding this poll and responding, the results are rather...surprising. From the very start, the least popular selection has been "my pediatrician." In fact, right now, out of 256 selections, "my pediatrician" has been selected a grand total of 6 times. That means that "my pediatrician" is a source of autism-related information to only 2% of those people polled so far.
The most popular selections are NOT federal or even medically reviewed websites (like www.autism.about.com). They are, in order of preference, "Parent and Support Groups Focused on Autism," "Any Website Focused on Autism-Related Issues," and "Autism-Focused Blogs, Magazines and Podcasts."
To me, this says that poll-responders are far more likely to rely on one another than they are to rely on medical professionals. In fact, as members of the medical profession have become more actively involved in autism debates, at least some parents seem to be turning their backs.
An online poll is not scientific evidence. But it is an informal and unofficial way to take the pulse of a particular group of people. And it certain is eye-opening!
Comments
Partly, you put up a poll on the internet and you get people responding who use the internet for information.
Secondly, this is a specialty condition. Note that you have over 6x higher response rate for “Medical doctors specializing in developmental issues”. I’d expect more people looking to specialists.
Third–most people with autism are likely adults. They or their allies are not going to look to pediatricians.
Also, what is “information”. As you noted in your intro to the poll, a lot of “autism information” is not medical.
I will not discount the effects of groups who have spent a large effort in specifically reducing parent’s confidence in their children’s pediatricians, though.
“I will not discount the effects of groups who have spent a large effort in specifically reducing parent’s confidence in their children’s pediatricians, though.”
Yes, I believe that organization would be the AAP.
But seriously, this isn’t a surprising result. Most pediatricians don’t seem to know that much about autism - so why would parents rely on them for information?
Matt - absolutely, there is a slant when you use the internet to poll people. there’s even a slant when you use cell phones! Hence the terms “unofficial” and “unscientific” in my post.
As to the “adults using pediatricians,” though, in fact most of the people being diagnosed with autism are very young children. Thus, typically, a pediatrician is the first port of call for a parent with concerns about his/her child.
The reality is, though, that general pediatricians don’t know much about autism. And medical experts on autism are hard to find and expensive to pay for.
My biggest surprise, to tell the truth, is that people responding to the survey are NOT turning to, say, the NIH or CDC sites - or even to WebMD or MayoClinic (setting aside About.com, which is HonCode approved but is not a “medical site” in the usual sense).
Instead, they’re turning to non-medical people, blogs, and publications - presumably because the level of trust in ANY medical source is relatively low.
Lisa (autism guide)
I think partially the reason I don’t head towards the NIH or CDC is because the information they provide is technical and brief. Raising my daughter is quite the opposite and I need information that helps me go beyond the definition or DSM criteria. It’s not that I haven’t visited the sites, but they don’t really do much to give me any extensive information on autism.
This is only surprizing to someone who has never asked their pediatrician for any useful advice concerning their autistic child. Why go back to a dry well more than once?
It isn’t really the pediatricians fault; they got very little (or zero) training on autism in medical school. In most instances, the mom down the street raising an autistic child knows more about the state of the art research on autism than their pediatrician. Again, not the fault of the pediatrician, he/she is seeing patients all day long as opposed to reading about autism.
If the mainstream medical community had any answers, any at all, about autism, they may be held in higher regard by parents. But they do not.
- pD
Pd, I’m with you.
And while I do feel that pediatricians (and even developmental pediatricians) may have reasons why they’re not well-prepared to provide direction to parents, they certainly should be able to provide information about where to FIND information!
By that I don’t mean “go to XYZ healthsite and read up on autism.” I mean - “here’s a packet of materials we’ve put together which includes contact information, recommended treatments and where/how to access them, etc. Here’s where to start the process, and these are your best resources for quick action.”
I really don’t think that’s asking for the moon - especially when so much of this information is available with so little effort.
And honestly, until/unless pediatricians and developmental peds/neurologists are able to provide such info, parents WILL go to one another and the general media as primary sources of information. After all, parents need info, need action, need hope. If docs can’t provide it, but others can, naturally parents will find what they need where it’s available!
Lisa (autism guide)
Agree with PD on this one. Only people who have never asked a pediatrician “What do I do now?” will be suprised by this poll. Funny thing is www.autismspeaks.com has a 100 day packet in both english and spanish which although nothing would be perfect is a great starting point to get people organized and includes information on both behavioral and biomedical interventions. They also have a searchable resource guide for autism treatment providers in your area, as well as 4 full time paid staff that do nothing but answer calls from newly diagnosed families and conect them with local resources. It is a shame the AAP isn’t doing more to educate it’s members on where to send people…
I do fault the pediatricians for not knowing about Autism - I mean come on, with soooo many kids are being dx’d, you’d think that the docs would want to educate themselves better on this topic. My hubby is a CPA and has to take Continuing Education classes every year to maintain his license. Don’t the docs have to do the same thing? If they don’t, then they should. I don’t go to my ped’s office for autism info, or even the pediatric neurologist office. When she dropped the autism bomb on us back in June, all she said was that we will need to fight to get him services, and to be his advocate. She did not give us so much as a pamphlet or a phone number of another mom to call for support - NOTHING. That is a disgrace. After my hubby and I cried in the parking lot and drove home like zombies, I went on a mission, to educate myself, because none of these bonehead high-paid docs (well, not all of them) were going to do it for me. I went to the bookstore that night and bought some books, and have been reading books, internet blogs and other online info, and have found a few moms to lean on. So, in a nutshell, I agree with you Lisa, docs should provide parents with some info to get started.
I don’t think any should discount the number of parents who poll and in my opinion, I’d say there’s a well balance to this site of parents and those with ASD however, being the poll included a pediatrician I’d assume adults with ASD probably wouldn’t be interested.
The first person who suggested autism, I didn’t believe for a minute. The 2nd to suggest it, I did believe and that was my son’s pediatrician. Of course she was a general practitioner in peds, not a specialty but she gave us a card for Early Intervention. Beyond all the choices and info about autism out there, this card was the starting point and an important aspect to get started on right away. Hardly a person can argue that the schools Early Intervention Programs is a start, and it’s beyond that point in which to wonder where parents go for direction.
It’s difficult to lump all pediatrician’s when there are a few out there that did just what they should had. I think regardless of what info is given by a Peds doctor, parents are still going to filter to other sources just the same.
I agree PD as well, however, BOTH my HIGHLY well respected pediatrician AND developmental pediatrician failed us in not seeing the signs for YEARS. The pediatrician even said I was an overreacting mom. I had to BEG to get a diagnosis and closer look at my boys and that was after a fellow mom/sister of persons with AU and counselor for families saw my boys for 5 minutes and said I needed to get them tested for Autism.
I agree they know NOTHING about helping me raise my children, however, I would have expected a lot better care and attention taken to their delays and ‘unique’ characteristics.
How does a reader “randomly find” the poll? What definition of random are you using?
In statistics, “random” means that each member of a given population has an equal chance of being chosen for the survey. To randomly choose a poll means that every poll on the internet has an equal chance of being chosen by your respondents.
If you are surprised that a noisy minority of anti-vaccine activists uses the internet to skew polls, then you haven’t been paying attention.
I’ve considered switching from my son’s very good pediatrician to one better versed in autism - only there isn’t really one in my area. My son’s pediatrician is extremely well versed in ADHD, to the point where he is comfortable writing a scrip (keep in mind he also treated my severely adhd husband) without making me go get the kid further evaluated (turned out the ADHD meds were no help though so we quit ‘em). However, as he has more and more clients with autism, he’s learning more and more about it - including suggesting getting our son tested for Fragile X - something I wasn’t quite sure how to ask him, being that our son shows no signs of it.
Hello,
I saw your poll and wanted to ask is there a survey that asked this question: whare do parents of autistic kids get information?” or what are the top websites they use?
Thank you.