Autism in the News: American Academy of Pediatrics Recommends Two Screenings for Autism Before Age Two
All U.S. children should be formally screened for autism twice by the age of 2, the nation's top pediatrician group recommended on Monday. The new guidelines issued by the American Academy of Pediatrics focus on early intervention, which can improve a child's chances for effective treatment. "If you recognize it earlier, you get them into treatment earlier," said Dr. Scott Myers, a pediatrician who specializes in neurodevelopment and who helped write two clinical reports designed to help pediatricians identify and manage autism.This is, of course, an impressive step - and it seems to be nicely timed with the publication of a new "video glossary" created, in part, by the autism charity juggernaut Autism Speaks. It also - not surprisingly - coincides with a massive media campaign, led largely by the folks at Autism Speaks.
In reading through the Reuters article, as well as a publication intended for practioners on the American Academy of Pediatrics website, I once again found myself torn. On the one hand, it's terrific to know that pediatricians will be better prepared to notice and diagnose developmental problems early. On the other hand, autism is extraordinarily easy to misdiagnose - especially very early on. And the AAP makes it quite clear that - while other treatments are available - Applied Behavioral Analysis (ABA) is the "scientifically proven" treatment of choice.
There's no question that ABA can be effective for many children with autism. But intensive behavioral therapy - at enormous cost - may be not only inappropriate but even counterproductive for many children who exhibit mild delays or differences. After all - 1 on 1 therapy with an adult for up to forty hours a week may ensure "appropriate behaviors" - but it certainly can't substitute for the developmentally appropriate play, peer interaction and experimentation that are so critical to normal child development.
In an ideal world, of course, the diagnosing pediatrician would be familiar with the many forms of treatment available, and present the best options (all of which would be covered by medical insurance). The reality, though, is that the vast majority of pediatricians are new to the world of autism. As a result, their ability to parse out possibilities, help parents make the best decisions for their toddler, and provide direction for financial support are ... limited.
What's your take on this new direction in autism screening and diagnosis? What do you think pediatricians need (in addition to a 22-page document on the AAP website) to help them help parents and their children with delays, differences and - perhaps - diagnosable disorders on the autism spectrum?
Comments
For the last 2 years my son received intensive BCBA supervised ABA and was exposed to typical peers almost constantly during the process. (I recommend that you read about one of the most popular and well-researched forms of ABA being used today … pivotal response training created by Rober and Lynn Koegel from UC Santa Barbara.) This form of ABA exposes children to typical peers the majority of the therapy time…and I would suggest that its use is far more common than the isolated form that you continue to use in your arguments.
Wait is a four letter word…
Fear is a friend who’s misunderstood…
Regret is a chronic condition …
Progress, like this, is a beautiful, beautiful thing…
In your recent posts, while acknowledging that ABA has its merits, you make mention numerous times about the potential inadequacies of ABA. In your last post you say “After all - 1 on 1 therapy with an adult for up to forty hours a week may ensure “appropriate behaviors” - but it certainly can’t substitute for the developmentally appropriate play, peer interaction and experimentation that are so critical to normal child development.” Statements like this are inaccurate about competent ABA programs. For each child in an ABA program, individualized teaching programs are developed for all of those areas you mention that are critical for normal development. Children are taught how to play and to interact with one another (among many other skills). And besides, how is the ability to engage in competent peer interactions or play not “appropriate behavior”? It sounds like you are hinting that ABA only teaches “splinter skills,” a common criticism directed toward ABA by advocates of Greenspan’s Floortime model.
My experience with ABA - and my research on the subject - has centered largely around the Lovaas method. I should certainly learn more about pivotal response, verbal behavior, etc. - and will do so ASAP!
Meanwhile, however, I still have concerns about applying an intensive behavioral program to a very young child whose diagnosis may still be in question. And I have a feeling that, with all the media interest in autism, there will be quite a few panicky parents and quick-to-diagnose doctors applying autism labels where they’re not really appropriate.
If I were making the choice for my own child, and felt that there were questions about the diagnosis, I think I would be more inclined to start with a developmental treatment approach.
The reason I say that is - I don’t think anyone can go wrong with using a play therapy with a very young child. At the very worst, the child will have a 1:1 play experience with a not-very-skilled adult.
But a poorly applied intensive behavioral program (and there are plenty of poorly trained behavioral therapists out there!) has the potential to create problems for a toddler. If you take a look at the recommendations, most really do suggest 40 hours a week of intervention - and it’s not unusual for that intervention to be mostly in the form of discrete trials.
So… my concern is not that behavioral therapy is inappropriate overall, especially when properly applied by a trained therapist. My concern is that the ideal therapy and therapist is pretty tough to find - even when you know what you’re looking for and have the tools and/or cash to find and pay for it.
Lisa
Lisa,
It seems that you definitely have been heavily influenced by the DTT dominance, particularly here in the Northeast. There are many ABA based therapies that are NOT like that, and I would even guess that DTT would be more in the minority across the country as the trend towards inclusion picks up steam. (I know in Texas where we moved from, DTT was definitely NOT the trend…)
Definitely find out more about these other approaches. I think you will find that there is so much more to ABA than what you’ve seen in the DTT model … (although it has its place as well)
In fact, if you thoroughly research PRT, I think you’ll find it is very much like Floortime ..
Just the ramblings of a retired accountant … so take them with a huge grain of non-scientific salt.
It took the GF/CF/SF/AF(gluten-, casein-, soy-, artificial-free) diet, combined with digestive enzymes, pre- and pro-biotics, a number of amino acids, and a number of medically recommended nutritional supplements to make my daughter’s brain ready to learn.
Once her brain was able, Applied Behavioral Analysis using Discrete Trial Training, Verbal Behavior, and Positive Behavioral Supports (ABA/DTT/VB/PBS) taught our daughter HOW to learn. Initially, the learning took the form of simple tasks (sitting in a chair for 30 seconds, imitating a gross motor movement like raising a hand, making a sound); but the program grew as she did. Thanks to intensive ABA/DTT/VB/PBS, she has filled in all of the gaps (her skills were incredibly splintered) and moved through years 2 - 7 in less than four years’ time; one teeny, tiny, baby step at a time.
My daughter’s program taught her EVERYthing in EVERY domain of life. She plays, eats, bathes, dresses, toilets, attends school, does homework, performs in school and community theatre, takes tests, talks, writes creatively, and loves JUST LIKE every other child in her “typical” Montessori classroom. A properly implemented ABA/DTT/VB/PBS program helps the child develop all life skills, fully, across any situation; a properly implemented biomedical program helps the child’s brain engage in the program — together, biomedical and therapeutic interventions help the child learn to learn from the world around them.
Certainly, 25 hours a week seems overwhelming to parents for “young children,” but in all honesty, this program works for ALL people - I have found the methodology incredibly effective in raising my two younger children. I have no doubt that children who do not have autism would quickly progress through whatever behavioral, speech, or other issue they may have using the very same methodology. Further, most ABA specialists rely on the ABLLS which breaks down the skills in all domains through elementary school, if a child has no deficits a program would not be designed and the child would be released; in the event there are specific deficits they are discussed with the caregiver and decisions regarding the best treatment mode would be addressed (ABA only, with Speech, with OT, with PT, no ABA, etc.).
Shame on us, as a nation, that only the wealthiest families (or those with dogged persistence and no small amount of good luck) are able to engage in intensive ABA or even to be able to afford organic food for their children!
I hope there will come a day where one will have to special order the cereal with neurotoxic sweetener and coloring at the local grocery store. No American will drown in debt trying to get health or therapeutic care. And our politicians will have to hold bake sales to get funding for their elections!
My child does what most ten year olds, plays Football, Ice Hockey, attends a physical exercise class, St John’s Ambulance Brigade, goes to sleep overs has lots of friend and he did not have ABA at all and was not programed in any way (thanks goodness). Please tell me how I managed this without telling me that he is not autistic he is.
Carole -
Yeah for you (and your son)! Obviously, you found the missing pieces and successfully made your son whole!!! That is wonderful!
Finding the right piece is a hard thing for many of us…At 2, my daughter was so affected by autism I was told she would never toilet train, use language to communicate, or toilet train; we were told to plan on an institutional future for her. She could not sleep, would not eat, did not respond to her name, had diarrhea up to 14 times a day, had a weeping, bloody non-stop rash on her behind, screamed for hours and liked to run her head into things.
She is now 8, LOVES sleep-overs, playing with friends, helping in the kitchen, snuggling with her brother and sister, playing with all kinds of toys, scoring “A’s” on her spelling and vocabulary tests at school, gymnastics, performing in community theatre, horseback riding, and so much more…
She is not some “programmed” automaton. Every one of us first learns a new task by imitating someone else, then makes that task uniquely our own, once we have mastered it. Some of our kids have significant myelin disruption. For them, mass trials help forge new pathways in their brains–once the path is there, my daughter uses her new skills in both expected and unique ways. She is amazing; sweet, funny, and a little stubborn, too! Thank goodness for a systematic “program” that identified her deficits and addressed them in a manner that was entirely successful!!!
Yeah for all of us who have succeeded in helping our children reach their fullest potentials!
I never believed that my son was not whole. I never sought a cure or to defeat his autism I sought shared meanings and understanding. I want my son to find himself and who he is.
We did not have the diarrhea we had cyclical vommiting which induced a catotonic state which left our son wiped out and unable to function for weeks on end and there were other things like his weeping eczema to contend so yes I have some understanding of how hard it can be.
The thing is we will none of us ever know for sure if it was the ABA, finding the right pieces, or simply the right time.
other than the ABA content of the article, the early screening and getting everyone on the same page is a great start. doctors need to start acknowledging warning signs than putting the parent off for a few months or years in the ‘wait and see’ game.
as for ABA, why even suggest it unless they’re aware of how feasible it is to the parent? most doctors are not located in the school district of where they’re patients live to know what is protocol or not. not all kids will respond to ABA either, just like any other intervention. I was told upon diagnoses a number of interventions to look into, they all were written within the diagnoses. one of them was 40 hrs intense ABA intervention. well, that never happened. what worked for my child was direct private 1:1 speech and O.T, and RDI. it shouldn’t matter if you’re rich or poor, some of these therapies charge way more than a parent could ever hope to afford. and I have to ask- with 40 hours anything, when was a child suppose to be a child? when would they be able to find themselves than be something or someone else? every waking hour should not be spent with a therapist. they should be training the parent in the skills of ABA and let the parent help more and be more of a family unit- than a family unit + therapist. if a parent can home school, a parent can learn ABA (JMO)
You should check out the actual language (irony of ironies for those of us who have children who struggle to actually SPEAK..) in the AAP report:
http://www.aap.org/pressroom/AutismMgmt.pdf
If you go to the section that discusses ABA, you’ll see that they refer to incidental teaching and pivotal response training in addition to the traditional discrete trial methods. They also don’t only recommend ABA, but also the TEACHH method…
ABA comes in different forms to help meet the needs of our very different children… Maybe you could have a discussion with Lynn Koegel of UC Santa Barbara (PRT) or Gail McGee of Emery University (incidental teaching) in some of your future blogs???
Autismville - I certainly will follow up with your suggestions to interview Lynn Koegel and Gail McGee, and thanks for your suggestions.
As regards the .pdf for pediatricians that you cite - you’re right, of course, that the paper does include mention of a variety of therapies.
The problem, in my mind, is that there are so few really solid studies to support developmental, social, and other interventions. If I were a physician reading the following exerpt, I would certainly conclude that by far the most appropriate intervention for any child with an autism diagnosis is very intensive ABA!
Here’s the quote:
Most educational programs available to young children
with ASDs are based in their communities, and
often, an “eclectic” treatment approach is used, which
draws on a combination of methods including applied
behavior analytic methods such as DTT; structured
teaching procedures; speech-language therapy, with or
without picture communication or related augmentative
or alternative communication strategies; SI therapy; and
typical preschool activities. Three studies that compared
intensive ABA programs (25–40 hours/week) to equally
intensive eclectic approaches have suggested that ABA
programs were significantly more effective. Another
study that involved children with ASDs and global
developmental delay/mental retardation retrospectively
compared a less intensive ABA program (mean: 12
hours) to a comparably intensive eclectic approach and
found statistically significant but clinically modest outcomes
that favored those in the ABA group. Although
the groups of children were similar on key dependent
measures before treatment began, these studies were
limited because of parent-determined rather than random
assignment to treatment group. Additional studies
to evaluate and compare educational treatment approaches
are warranted.
To clarify, PRT and incidental teaching, when done correctly, ARE intensive (25-40 hours per week) programs…
The program my son attended was 30 hours a week of intensive ABA. It was a replica program of the Walden Program at Emery University, which uses the incidental teaching model of ABA … very similar to PRT. So again, don’t just think of intensive ABA as just Discrete Trial. PRT and Incidential teaching fall under that umbrella as well.
And most definitely the experits (Drs. Keogel or McGee) would do a MUCH better job of explaining all of this. I just want to provide some hope to those who think that intensive ABA is out of their regional or economic reach.
This comment is particulrly directed toward Kenneth Reeves. What you essentially fail to realize, as many with behavioral analyst training fail or care to realize, is that a more “individualised program” utililizing, for example, PRT (pivotal response training), is still nonetheless, exclusively focused upon “adult directed child behaviors” (even when utilizing some of his/her natural interests). A comprehensive child/family directed approach, such as DIR/Floortime, focuses not on “compliance to appropriate behaviors” or “isolated skill sets” but upon the underlying foundations (processes) that constitue the healthy emergence of the child’s autonmy. This implies not a hyper-vigilant focus on “school readiness” or “compliance” but actually taking the necessary and indeed indispenable steps of going to where the child is and joining in his so-called “maladaptive behaviors” (e.g., hand flapping ,spinning etc.). ABA does not do this. Why do we do this, you may ask? We do this because we are going beyond “tagging the child surface behaviors as maladaptive” and, instead, joining in current activities that we recognize are “meaningful to the child” and indeed represent the potential for further co-regulated “meaning making” opportunities.” The child, in turn, feels validated by our participation in his activity. Thus, the first level of joint attention begins to be naturally achieved. Once these tiny bits of joint attention or reciprocity are established, we begin to vary (that is by doing), the nature of the affect (e.g., spinning, flapping, etc. in a slightly different manner). Thus, we are adding more affect gestural and verbal reciprocity, consequently resulting in greater meaningful (not rote) engagement). What you need to understand is that this increasing co-regulated affect cuing/reciprocity is done on the child’s terms, that is within the context of the child’s emotional-developmental, individual sensory processing and family relationship based patterns. This is not compliance to more “better and improved forms of behavior” rather this is clinically and meaningfully deepening the forms of social reciprocity (meaningful two-way-social emgagement) by working within the context of the child’s natural intent or affect, combined with utilizing his/her individual biological procesisng based strengths (e.g., visual spatial thinking or auditory processing differences). This in no shape or form can be conceived of as “compliance” but, again, working within the context of the child’s underlying processing differences, which consistently leads to spontaneous pragamtic language usage and higher critical reflective skills, such as empathetic based thinking, in a truly autonmous and integrated manner (which ABA unfortunately does not do!). This vast, subtle and complex understanding of the child’s underlying functional emotional and inividual processing differences, are merely given lip service, if that in Pivotal response training, which admittedly is a baby step in the right direction.