Irresponsible Pediatrics paper argues against autism screening

In work published in the journal Pediatrics (PDF available here), an assistant professor and co-authors have recommended against early-screening for autism. He's quoted as saying that screening is not accurate enough and could misidentify children as having autism when they don't. In one article, for example, he says,

“You could miss-label (sic) a child,” said McMaster researcher Dr. Jan Willem Gorter. “We know that a child can be over diagnosed based on symptoms. For example, if a young child doesn’t respond to its name it could well be an early sign of autism.

“But it could also be something as simple as a hearing difficulty.”

Yes, he's right. Wouldn't you want to know either way? A screening is a screening. It's not tantamount to a diagnosis. Diagnosis comes, as many of us know, after hours and hours of forms and scales and evaluations by, in our case, developmental pediatricians, audiologists, speech-language pathologists, and occupational therapists. There's no way--NO WAY-- a screening in a pediatrician's office would do anything except potentially lead to a referral. Pediatrician's don't diagnose autism. And the referral would distinguish between autism and a hearing difficulty. This argument on his part is invalid.

The study author says that his review of the literature turns up no good screening tools for autism and no data indicating that the benefits of early screening outweigh the harm. I assume the harm is parental worry or unnecessary expenditures within the healthcare system. So...do we throw up our hands and say, "Oh, well. Never mind."?

The authors also argue that there are no effective treatments for autism. That argument carries an air of, "Why bother?" This entire paper baffles me. It's framed as as series of questions, including whether or not screening has been demonstrated as effective in a randomized trial. Given the urgency of early intervention--which has proved effective, despite the authors' argument--do we have time to wait for an RCT for a screening that, as the author quoted in the story himself says is "harmless"?

How do such children get referred now? It's not a clean system. It's hit-and-miss and largely driven by parental concern or pediatrician instinct or both. But screening in some way or another, as currently recommended by the American Academy of Pediatrics, lets the pediatrician, who only sees a child either in ear-infection crisis or during brief well checks, take the pulse, as it were, of the child's development in some sort of concerted, organized way. Whether screening is done with a validated screening tool or gut instinct, it needs to happen, and I find it rather questionable that a pediatrician would come out against it.

The latest vax = autism thing

I've blogged the Gayle DeLong (of SafeMinds) vax = autism correlation study over at the Biology Files. The bullet-point version is as follows:

• the abstract sets the entire study against the backdrop of a falsified hypothesis and makes several unsupported assertions
• reviewers should have dinged the paper for several statements in the abstract and conclusion alone
• the author rolls autism together with "speech and language impairments" and then refers throughout the paper almost exclusively to autism
• the title of the paper doesn't fit the paper's findings (e.g., see above)
• there is a clear, clear bias here that lacks any balance from any other source or author
• the author is not an epidemiologist and lacks expertise in any health or natural-sciences-related subject area
• the author cites papers from the Geiers (three papers), Medical Veritas, Mark Blaxill, and a paper published in a vet journal 16 years ago, all of which shouldn't have gotten past reviewers
• the author moves the "vaccines-are-at-fault" goalposts yet again, strongly suggesting that aluminum must be to blame if thimerosal isn't
• while meanwhile refusing, in the conclusion, to be convinced by large studies showing no link between thimerosal and autism or vaccines and autism.

Words, words, words: Which ones matter?

I've just read a review of the movie, Fly Away, by Janet Grillo (executive producer of Autism: The Musical fame). I haven't seen the movie, which addresses the difficulties a single mother and her intensely autistic adolescent daughter experience, but the review lit up a few synapses in my otherwise moving-overwhelmed brain. Having spent the last few days taking my child with Asperger's to restaurants, hotels, parks, and other public and unfamiliar places and dealt with the sequelae, a few phrases in this review struck a chord with me...and not a harmonious one.

Anyone who's been reading this blog knows that my son, TH, has been diagnosed with Asperger's. The way his autism has manifested has changed over the years, starting with a classic presentation of meltdowns, absent pragmatic language, obsessions over "abnormal" objects and subjects, flapping, lining up toys, and so on. I've chronicled his experiences here for several years, covering his days from public school kindergarten to being a fifth-grade homeschooler.

TH can talk. Sometimes, he makes a lot of sense and has insights that surprise us. Sometimes, he makes no sense at all. It varies from day to day. It varies from hour to hour. But he's verbal, and what I quote from him here comes minus his interjections and non-sequiturs, his loud, unmodulated voice, his grimaces, his flapping, his Eeeeeees. Those features I just described become more prominent in situations of excitement, novelty, anxiety, and fear, and lately, he's seemed to have more and more difficulty controlling them when we ask, as we do in restaurants and other public places. One reason we think this up-tick is happening is the onset of adolescence.

My son is a smart, autistic person. He does not appear to have a broad-spectrum intellectual disability, although he has some clear learning disabilities that we accommodate in many ways in our homeschooling. He's insightful enough about his autism to be able to articulate--with some quote-smoothing from his mother--exactly how he views autism and his expression of it.

But he's not intellectually brilliant. He has no savant skills. He's got some preternatural naturalist abilities, but that's related to his fine visual perception and discrimination and his early fixations--imprinting?--on the natural world.

The bottom line is, our son is an autistic person who is not intellectually disabled. He's learning disabled. Socially disabled. Communicatively disabled. But as far as cognitive abilities go, he's fine. Does that make him somehow not autistic enough? Why do I always see this question rising like a challenge from comments like the one below?

The movie review I mentioned above quotes Grillo as saying, "There are now 800,000 Americans with autism...most people on the spectrum of autism are NOT intellectually gifted Asperger-types. They will never function independently, requiring 24/7 care for the rest of their lives." (I corrected a few things in the quote).

Later, Grillo is quoted as saying, "In Fly Away, I chose to dramatize severe autism, unflinchingly and without sentimentality."

Reading these two quotes and seeing autism described in the review as an "illness," I had a reaction. My first reaction was to ask, Is it true that most people on the autism spectrum will require 24/7 care as adults? That's a serious question, and if anyone has data on that, I'd appreciate the information.

After the data-seeker in me was finished critiquing, my personal queries surfaced. In that quote, Grillo seemed to be linking "Aspergers-types" (what is that?) with intellectual giftedness. That's a stereotype that doesn't even fit the current DSM-IV description of Asperger's, and from what I've read, most people with Asperger's are of average intelligence. Not to hammer on Grillo personally, as she's by no means alone in bringing it up, I'm sick of that "gifted" stereotype; its effect is to both dismiss people with Asperger's as simply suffering from an overabundance of awkward brilliance and to dismiss them as not having "real" autism. The upcoming DSM-V would beg to disagree, rolling all spectrum diagnoses into one, under a single autism umbrella.

That decision makes sense to me. Autism is not a measure of intellectual ability. It's a communication disorder that can occur with or without intellectual disability and with or without intellectual giftedness. Not every autistic person is a savant, not every Aspie is brilliant, not every intensely autistic person will require 24/7 care for the rest of their lives. The one thing that they do have in common is that they all have a communication disorder called autism. Some may call it a difference. Some may called it a disorder. But I can't see it as a disease or an illness, both of which describe poor or bad health. My son is one of the healthiest people I know. Am I quibbling? I don't know. Is Down Syndrome considered an illness or a disease? What about Williams Syndrome, or Fragile X?

At any rate, my healthy autistic son is now becoming more aware of many things, one of which is this blog and the things that I write about him. He's a great child, but I can already see some things coming up, things that I'd love to blog about for insight from the autism community, things related to the confusion of puberty interacting with some of his autism-related differences. We're working very hard around here, but I can't provide many specifics, and as his issues emerge or if they continue to emerge, any crowdsourcing of insight or support will occur more and more behind the social scenes. Let's just say we've had a few instances, and I can clearly see the autism confusing what will already be a confusing time.

When it comes to adolescence, no one can say what will happen, whether there's autism or not. I know parents whose neurotypical adolescent children have proved to be raging, hormonal nightmares. I know parents of autistic teens whose experience with their adolescents was relatively harmonious, but I also know autism parents who, with their autistic teens, had an unpredictable, horrorshow existence, parents who have made the wrenching decision depicted in the film of having to place their child in a residential facility. Read to the end, and you'll see why I think a movie like this may help exactly such parents...and how Grillo and I agree precisely on this point.

But one more graf o'complaining. Watch Grillo's previous outing as an executive producer on Autism: The Musical, and you'll see even among that small group of autistic children a variety of personalities and behaviors. Not all autistic children or adolescents or adults rage. Not all people with intense autism are intellectually disabled. While I appreciate Grillo's film as I've seen it described and her goal of showing unflinching reality, I'm concerned that her comments about the film, as given in this review, will close minds that may have been opening to some of the unexplored possibilities of what's happening in the minds of autistic people.

My reaction to Grillo's comment was chaotic. I have now hurled up this long, possibly equally chaotic blog post as catharsis. It doesn't help my attitude or my perspective that Grillo blames vaccines for her son's autism. The thing is, though, she's a woman with a plan. Yes, that plan is to donate some proceeds to Autism Speaks, which she joined as a board member back when it was Cure Autism Now. But her reasons for having made Fly Away go beyond what the review quoted. She's sketched them out here. While I have a minor concern that such films will reinforce autism stereotypes, I hope right along with Grillo that for autism parents who have these toughest of choices to make, Fly Away will show them they're not alone. For them, that stereotype is reality.

In journalism, you're not supposed to cherry-pick quotes to drive truth in one direction or another, but here's a quote from Grillo, commenting on her film, that I choose for my lowly blog:

I’ve also watched parents unable to place their children in full-time therapeutic residences, when it was clearly needed. While such placement is not best for all or even most children on the spectrum, it’s tragic when parents are too plagued with fear and guilt to make the choice when it is. If Fly Away eases the pain of even one parent’s torturous decision, or if it expands the heart of even one person untouched by Autism to accept our children and appreciate our struggles, it will have been well worth making.

As with so many things in the autism community, while I've expended hundreds of words here rambling on about where I disagree with someone else, these few words on which we agree are the ones that matter.