The kid’s autistic: the Generation Rescue website says so

30 Jul

If I were good at being respectfully insolent, I might try to make a joke out of how Generation Rescue has changed into Generate Revenue over the past year or so.  Generation Rescue’s website now offers multiple ways for people to spend money. From “let’s go shopping” to the multiple “shopping affiliates”, a portion of everything you spend from supplements to saunas could go to Jenny McCarthy’s autism organization.

But insolence is best left to the pros.

Aside: there is a link to have a personally autographed copy of Jenny McCarthy’s latest book sent out. I resisted the temptation to spend $99 to have a copy sent to CHOP with the inscription, “Paul Offit! You Rock!”

See, I should leave the insolence to the pros.

So, back to the story, I saw an interesting link on the Generation Rescue main page recently:

Concerned your child might have autism? Take our survey

Click the link and you get to a survey:

CARD Autism Symptoms Questionaire (ASQ – BETA) powered by: Generation Rescue

CARD being the “Center for Autism and Related Disorders”. They are an ABA group, headed by Doreen Granpeesheh, who also works at Thoughtful House (Andrew Wakefield’s clinic).

OK, I passed on the signed book, but I couldn’t resist the free survey.

I took the survey. I used information from a child I know very well; a child who is definitely not on the spectrum. Five minutes later I was surprised to find out that “A diagnosis of Pervasive Development Disorder Not Otherwise Specified (PDD-NOS, a mild version of autism) appears to be indicated.”

It wasn’t even close, according to the CARD/GR website.  Here are the results. The blue bar shows the results for the kid.  That bar is almost 6 times higher than the cutoff for PDD-NOS.  It’s also wider, what does that mean?

CARD/GR survey results (for non ASD kid)

CARD/GR survey results (for non ASD kid)


A little internet searching and I found this disclaimer for the survey in a Generation Rescue email: “This is not a substitute for a formal diagnosis by a professional, but it is a free and accurate way of determining if a diagnosis is likely.”

Accurate?  A non ASD kid is shown to to be well into the PDD-NOS range, and that’s accurate?

That was just one kid, and perhaps PDD-NOS is “mild” enough to be a common “misdiagnosis” of the survey. A friend of mine took the survey too, again using information from a real, non ASD kid.  The results?  Autism is indicated. Not PDD-NOS, but Autism.

At least the survey results included a link to the Generation Rescue guide to recovery.  With luck, and a lot of supplements, chelation, saunas, HBOT, we might just be able to recover these (non ASD) kids.

Maybe I can enter the recovery stories on the GR website to inspire others.

The reality of the situation is that this is no joking matter.  One major problem the California Department of Developmental Services ran into in recent years was early intervention groups who were both diagnosing and treating young “autistic” kids.  Funny thing, for some of the groups, none of the kids were eligible for services beyond age 3.

California is seeing big budget cuts to the Department of Developmental Services.  There is a very real possibility that groups are using inaccurate testing techniques to “diagnose” kids with ASD’s and then doing tens of thousands of dollars in possibly unwarranted therapies.   We just don’t have the money to throw away like that.  We never did.

18 Responses to “The kid’s autistic: the Generation Rescue website says so”

  1. Leisa Hammett July 30, 2009 at 22:54 #

    Kick ass, baby!

  2. Joseph July 31, 2009 at 00:08 #

    The only way to check if a screening tool is useful is to see if it has been tested in the real world. This CARD thing apparently has never been tested, based on quick Scholar search. Sounds completely made up.

    Now, why is GR using a screening tool whose accuracy is entirely unknown, and why does it call it “accurate”?

    • Sullivan July 31, 2009 at 00:41 #

      Joseph,

      I would venture to guess that driving traffic to their site and get people into the GR community as quickly as possible trumps accuracy. They may believe it is accurate, but I know of at least 3 trials of the survey that failed to identify a non-autistic kid accurately.

  3. Nicky July 31, 2009 at 00:28 #

    The GR site has become very orientated toward money, which is sad because bitd they were simply trying to (misguidedly) support parents. It has completely changed since I was last there, ages ago but still. My goodness, she’s doing very well out of her son, isn’t she? I’ve been actively avoiding those people/sites, and didnt realise that JM/JC had become so immersed with them. Blimey.

    I wonder how they are allowed to post up links to that test, its very unethical, not to mention utter garbage. I hope that they can be seriously challenged by professionals over their use of it. Its just another hook to ensnare desperate parents, and makes a mockery of honesty and integrity.

  4. Bonnie Sayers (autismfamily) July 31, 2009 at 04:39 #

    I got an anon email thru my autism site on Monday JUly 27th-

    “Have you ever tried alternative medicine instead of all those psychotic drugs your feeding your kids? You just might see some improvements and -real results. Even if parents stop feeding kids-pop and hot dogs -they will see a big difference in behavior.
    Go to Jenny’s site and get informed on the causes of autism – she knows how to do it.
    See: Dan Doctors too….they can help”
    ==============

    I did tweet about it a few times, I worry that the Jenny fan club is sending this email out to sites where a newly diagnosed family has a blog or something.

    Bonnie

    • Sullivan July 31, 2009 at 05:36 #

      A cynic might say they are using the classic strategy: “get them early before they figure things out”

  5. Navi July 31, 2009 at 07:49 #

    My developmentally advanced, over-social, has none of the traits of autism or other PDDs as described in the DSM-IV, ADHD child apparently has PDD-NOS. haha. rotflmao. hahahahahaha. basically because she has like 2 splinter traits falling under ‘stereotypy’ (she has obsessions, as many adhd kids do, and it’s difficult to distract her when doing something she likes, as is true for just about any child). all my other responses were negative for the autistic symptoms. I think I will take it again and answer all of the questions in the negative for autistic symptoms and see what it says. It’ll probably be pdd-nos.

    and I am thoroughly irritated by the assertion that pdd-nos is ‘mild’ autism. My son is considered classically autistic by some, and PDD-NOS by others. A classic autism diagnosis is debatable because of how he interacts with adults. His ASD is definitively not mild.

    • Sullivan July 31, 2009 at 15:08 #

      “and I am thoroughly irritated by the assertion that pdd-nos is ‘mild’ autism. ”

      I found that annoying as well.

      thanks for taking the survey–it is interesting to see it fail again. One thing that I find tough to do is to answer as though I am new to autism. Like you note, misuse of pronouns and obsessions is common at certain ages.

  6. Navi July 31, 2009 at 07:59 #

    I decided to base it on my other daughter, Lily, who doesn’t currently exhibit any signs

    I did lie about the improperly using pronouns though, because um, just about every toddler does that.

    it actually said she didn’t have one, but the graph looked like she did. really bad graphing. I’m guessing it’d have said pdd-nos if I told the truth about the pronouns.

    oh and I forgot one other trait Lola had positive, repeating words or phrases…. she likes to say ‘I like bunnies’ when she can’t think of anything else to say. She’s fully aware it’s weird, and makes no sense, but she still enjoys it. (just gets annoying after a while).

  7. Corina Becker July 31, 2009 at 19:02 #

    Heh, I ran myself through the survey, and they said I have Autism. Which is true, I do have a diagnosis of Asperger’s.

    Then I ran what I knew of a neighbour kid who is NT through it, and got PDD:NOS.

    I need to point out, that it is a BETA. but yeah, I’m watching my mail to see whether putting my email address in that thing results in anything.

  8. Ringside Seat July 31, 2009 at 20:21 #

    This is a scam to coach parents on what they ought to tell the pediatrician if they want an autism diagnosis. Probably in a lot of places the professional assessment would be so poor, or so late in the day, that those who wish to book their place in the litigation line, or get passported for services or education, can crib up from this on what they need to say, and swear blind that their child makes no eye contact at home, play with other children etc, etc, even if he does in the pediatrician’s office.

    One would have to ask the question: why is this on Generation Revenue’s website at all? What is it meant to accomplish?

  9. Dawn July 31, 2009 at 22:52 #

    My oldest child, whom I fudged the age on, but answered the questions as best I could based on her behaviors at the time, got a diagnosis of autism. Funny…I always thought we had strange people in our family, but no one with a real diagnosis. Maybe I should ask my adult child to be evaluated (once she graduates from Very Large University with high honors).

  10. AutismNostrum August 1, 2009 at 22:50 #

    This is so wrong on so many levels. Ugggh.

  11. daedalus2u August 2, 2009 at 01:10 #

    It is the perfect set-up. Have parents “diagnose” their “autistic” children by the GR survey and be scared into buying various biomedical crap, chelation, HBO, low gluten, supplements, etc and into not vaccinating. When the child goes to an actual specialist, they are not diagnosed “autistic” because they have been “cured” by all the biomedical crap and by not being vaccinated.

  12. Sullivan August 2, 2009 at 01:27 #

    deadalus2u,

    even if they don’t buy into the “my kid was cured”, the parents may be won over into the “vaccines cause autism” mindset.

    Either way, it is a win for GR.

  13. Broken Link August 4, 2009 at 13:06 #

    Heh. I ran my totally typical 18 year old daughter through the test. And she came out PDD-NOS as well! Does she engage in jargon, yes. Does she not engage in meaningful conversation with me, yes. Does she show obsessions – yes, well not for trains, but for makeup and clothes. Does she enjoy tickles? Well, no.

    And even she was not too old to put into the survey, which doesn’t seem to consider that 18 year olds might not enjoy tickles at all.

    • Sullivan August 4, 2009 at 16:29 #

      Broken Link,

      funny that an 18 year old non-autistic would come out PDD.

      I have a proposal–GR should put all their “recovered” children through the survey.

  14. Calli Arcale August 4, 2009 at 18:58 #

    I plugged in data for a real, PDD-NOS diagnosed child and it came out PDD-NOS. The interesting thing is that the brokendown scores didn’t really track well to how I answered the questions. Also, having taken real diagnostic tests such as the ADOS, I have to say that these questions are nowhere near precise. They’re all binary, for one thing, which is ridiculous. Of course, terming PDD-NOS “mild autism” is evidence enough that they don’t know what they’re talking about.

    EDIT: Forgot to add that, although the numbers they give have no information to tell what the heck they mean, it looks like they’ve labeled my daughter as much more severely impaired than she really is. I also was not impressed at the questions asked; they all centered around some common stereotypes of autism, rather than real symptoms that would be more useful diagnostically.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: