So, to begin (and no offense was intended...) I started with the individual who initiated yesterday's discussion - twitter account Age of Autism. Okay, actually I started with some research, but the rabbit hole was too deep so I needed to start the entry and document this stuff because later I was not going to be able to put it into a cohesive order... so this isn't actually the first thing I saw (but you get to! yay!):
I want to step back here for a sec and include this - which I don't think was included in my other post... I got confused at one point as we were talking about a cure (and I had said something about parents forcing children to participate in the "cure") and first the response was, "Parents force their kids to do things every day - take meds, go to school kids w ASD are forced the most don't U think?" to which I admitted that I had been forced to take medication. So next was, "We had a post from a woman w asd about the horror of risperdal. It's a matter of medical "acceptability."" and my response: "You do realize that medication can affect us in ridiculous and strange ways... right? I don't agree with medical acceptability." and then, "Even painkillers don't work the right way for my girls - or anesthesia!" ... so I just want everyone to note that she then seemed to agree with me regarding medication and the top of the page is an entire row of pill bottles... Also, risperdal is for schizophrenia or manic episodes though I do not deny that it may very well affect someone with ASD is ways different that NT's (or the specific health group used to test meds) ... granted those are for supplements... which aren't regulated by the FDA (Generally, manufacturers do not need to register their products with FDA nor get FDA approval before producing or selling dietary supplements.* <- the asterisk specifies that if they "manufacture/process, pack, or hold food" intended for consumption in the US "are required register their facility with the FDA" -1) ... also, the site is "www.ourkidsASD.com" and they allow searching for supplements but don't list "autism" "aspergers" or "asd" which is implied in their name -2 /sidetrack
Anyway... Stagliano. (we will ignore the other thing you noticed for now... I know you saw it, I promise we will get there...)
Looked at some of her posts - okay, 2 - and enjoyed her hutzpah -3. and I have to say, that article (aside from having an expressive title) told me more about her life and her children than I got from her website and book excerpt. ... brb
For ease in following, I'm going to interrupt this again... just one more time... I promise...
I also clicked the "treatment" link on the "AgeofAutism" page... listed therein was this:
"
And this -5:
And now, we can go back to Kim Stagliano...Starting with her website... -6 (you knew that was coming, do not act surprised.)
I got the joy of starting here and knowing nothing about her (and honestly, I can't remember now how I ended up here before the AgeofAutism site... but I did and I do not care to retrace my steps - hence why I started blogging while I searched. duh.).
I read an excerpt from "All I Can Handle" and still had no clue about where on the spectrum her children were (other than the fact that one has issues with urination and I can throw exactly zero stones at that) or any picture of her other than just frazzled due to an instance of freakish mayhem...
Since she had been the one talking about cures for autism (which her website did make it clear to me that she wants a cure as she fears how her children will be cared for after she is dead... she may have other reasons.) I decided to click "Autism" which gave a list of websites. Rather than go through each one, one at a time, I read through the list until I came to "Talk About Curing Autism" which seemed a logical place to start. Remember how I said at the top of this that "no offense was intended"? Well, the reason for my disclaimer is about to become fully evident.
Talk About Curing Autism -7 (it's right there, calm down! I didn't forget.)
First thing I noticed: "Autism Oakleys? hehehe, okay, that's kinda awesome"
Second thing I noticed: "Nothing is really clearly noted "Treatment" so that one can easily figure out where to start... but this option expands to include "medical", "learning", and "resources" ...."
Third: "Hey, look! "About Autism" ... let's start there... ooh, "Latest Autism Statistics" ..." CLICK
....
This would be where the rabbit hole began... right there. I even made it bold so it would stick with you.
Started harmlessly enough...
So, no. The research doesn't differentiate "Autism" from "Autism Spectrum Disorders" which include PDD and Asperger's Syndrome. I'm sorry... but if you're going to present an opinion, awesome... but do not give false facts to support your opinion. This is not to mention that Autism didn't even make it into the DSM as a specified diagnosis until 1980 with DSM-III which placed it under the heading Pervasive Development Disorder -10 ... therefore there's can't be statistics for it from the 1970's ... It looks like it didn't exist, but that's not true.
I would like to take this opportunity to field a few disagreements I had with a presenter regarding this exact thing...
She put a chart on the wall which showed diagnoses of ASD's. It was reflecting individuals up to the age of 21 who were diagnosed and how the incidence of ASD's was increasing.
The information was labelled by year, the year that the person was diagnosed. I pointed out at least 2 problems with her data-set, just upon a cursory glance:
1a) As the data wasn't standardized by the child's age (ie. anyone who was diagnosed, they were counted in the year they were X years of age... if X=9, then a person diagnosed in 2001 at age 8 would be counted in 2002 and a person diagnosed in 2001 at 20 would be counted in 1990) so the numbers could be skewed/altered by diagnostic experience - especially as "Asperger's Syndrome" didn't make it into the DSM until DSM-IV in 1994 (the text-revision was published in 2000) ... you'll notice that automatically means the Aspie I identified in my example would have been 13 and unlikely to have been diagnosed.
1b) There are studies which correlate heredity between ASD's (particularly Asperger's - or I should say, particularly I'm aware of this within Asperger's) and parents/grandparents/other family members either qualifying on the spectrum or with 1 or more diagnoses which would qualify as part of a possible ASD "cluster" of diagnoses, even if there weren't enough diagnoses to qualify as ASD. There are also several accounts of people describing other family members (grandparents, etc.) as meeting some/several of the markers for ASD. (those people would not have been included as they wouldn't have ever been diagnosed)
2) Autism entered the DSM-III in 1980... what else happened in 1980? Computers took off in a HUGE way... which gave opportunities for people on the "milder" side of the spectrum (who would likely not been diagnosed with Autism) to have access to successful, well-paying jobs. Which usually means those dorks/geeks/freaks now make good prospective husbands/fathers... instead of unsuccessful and shunned they prospered. And likely had more children then they would have prior to the silicon revolution.
And because I just can't help myself... scroll down the CDC's 2012 page for this:
Okay, so that's all for now. I will continue to look into treatments offered/suggested and examine them, but at a later date. I also promise to cover that other thing I previously mentioned. In case you forgot or didn't notice it... here it is. Because wtf is subtly? I do intend to investigate this as well... was it discredited?
Actually, I also wanted to mention a few more things. First, some of what I did notice TACA included was information/resources about gluten/casein-free diets. Part of that included resources for planning menus on a meal budget and even under the restriction of relying on food stamps. I also want to direct attention to this blog entry by Mom to Boy Wonder because different things work for different people (when you've met one person with autism, you've met one person with autism). People on both sides of the treatment debate have strong opinions. Some (to most) of us with an ASD do feel that we understand more of what goes on within the ASD - and this is undeniably true - but others will not listen if we don't provide our opinions/feelings/ideas in constructive ways. We with ASD must also remember that we do not know what that other person is feeling or dealing with first-hand either.
G'night!
Resources displayed as accessed on 07Aug12 (or 08Aug12 depending on if it was before or after midnight...):
1. FDA http://www.fda.gov/food/dietarysupplements/default.htm - last update 05/01/12
<- 2. http://www.ourkidsasd.com -
displays as "OurkidsASD.com
from title bar.
3. Kim Stagliano - You can call me angry just don't call him Autistic as printed here: http://www.huffingtonpost.com/kim-stagliano/you-can-call-me-angry-jus_b_46385.html - posted 20Apr07
4. More info here: http://www.autismrevolution.org
5. http://www.ageofautism.com/2012/08/free-two-day-event-as-talk-about-curing-autism-philadelphia-chapter-welcomes-dr-richard-frye-to-spea.html - posted 02Aug12
6. Kim Stagliano dot com - no, really -> http://www.kimstagliano.com/index.html
7. Talk About Curing Autism - http://www.tacanow.org
8. Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007 - http://pediatrics.aappublications.org/content/124/5/1395.abstract
9. CDC: Main page for Autism - http://www.cdc.gov/ncbddd/autism/index.html - header is "Autism Spectrum Disorders" - from there you can get to here: http://www.cdc.gov/Features/CountingAutism - last updated 29Mar12
10. Canadian Psychiatric Association, eh. Discusses diagnostic criteria and changes (along with other psych-y stuff) - http://ww1.cpa-apc.org/Publications/Archives/CJP/2003/september/tidmarsh.asp - Published September 2003 - Their source (#7) is from nih.gov's older site and is no longer accessible.
(I accept that I provided several hits for ads/sponsorships which may likely provide money to "AgeofAutism" in the creation - and eventual posting - of this article.... you're welcome. If you need to know where to send the kickback money, email me but I'm not going to hold my breath.
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