Sometimes what we feel isn't so much outrage as frustration. Frustration seems to be increasing (but who knows, as we haven't measured it, and I'm currently using availability heuristic to draw this conclusion, so could be totally incorrect). Okay, maybe it's not, overall. Who really knows about overall feelings, beliefs, thoughts, tendencies in the autistic community (speaking specifically of autistic individuals here) and those in the broader community supporting and caring about autistic individuals? No one does. No one has done a thorough survey with a large enough sample to be able to generalize. And even if someone had, it still would be a generalization that missed almost as many people as it captured. Consensus in the autism community? Hah. No.
Okay, then, if I can't get away with generalizing out to the community and being accurate, then let me be specific and confine my thoughts to what I have personally read today: an Academy of Pediatrics policy statement on sensory integration therapy is being covered by various news organizations, blogged about, tweeted, facebooked, etc. Some parents and autistic individuals reading the news coverage, like USN's,may be understandably concerned with the statement and the language about sensory issues, as sensory integration therapy is popular with a subset of occupational therapists.
News stories are about polarizing and sensationalizing. They are about snapshots. They are incomplete, potentially (and probably) inaccurate pieces written on the fly. Fact checking is often not done for daily stories. Instead, it is the full-length features with investigative journalists who can invest time, effort, and energy to get it right, that readers can better rely on. Skepticism is still the best tool you can have in your tool box.
The news coverage on the sensory integration therapy AAP policy statement does not link to the policy statement, so many readers will only have that news coverage to base their reaction on. This is NEVER a good idea. Yes, it's easier to read a quick headline, or scan a news story, and make a judgment, but all too often, doing so will result in the reader believing incorrect or incomplete information.
When possible, always go to the original source. Even press releases can be horribly incorrect. Interviews with scientists in newspapers often have the newspapers quoting or attributing to the scientist more than the study really shows. ALWAYS, if it's important, check the original source and read carefully before making a determination. If it isn't important, then refrain from coming to a conclusion. Knee-jerk reactions are exactly that and are rarely helpful.
On the issue of sensory integration therapy, as viewed by psychologists and pediatricians, the reality is that the AAP's policy statement is nothing new. Sensory integration therapy has never rested on scientific studies concerning its plausability as a remedy for tactile defensiveness. The policy states,
"It remains unclear whether children who present with findings described as sensory processing difficulties have an actual “disorder” of the sensory pathways of the brain or whether these deficits represent differences associated with other developmental and behavioral disorders. Specifically, the behavioral differences seen in children with autism spectrum disorders, 24 attention-deficit/hyperactivity disorder, 25 and developmental coordination disorders 26 overlap symptoms described in children with sensory processing disorders. Studies to date have not demonstrated that sensory integration dysfunction exists as a separate disorder distinct from these other developmental disabilities. Furthermore, numerous challenges exist for evaluating the effectiveness of sensory integration therapy, including the wide spectrum of symptom severity and presentation, lack of consistent outcome measures, and family factors, which make response to therapy variable. 27–29"
In short, there's no good evidence that sensory processing disorder exists separate from other developmentally delayed conditions, and it's really hard to judge whether the therapies in and of themselves are helpful long-term.
The AAP is not saying that autistic individuals, individuals with ADHD, and others don't have sensory issues which result in behavioral displays signalling distress. They are not conflating behavioral issues with ACTING OUT.
Many OTs who use sensory therapies do so in conjunction with other occupational therapies. It's rarely stand alone. As long as it's being done in conjunction with other therapies, as long as it's recognized that it hasn't been studied, swing away. Brush away. Introduce your child to a multitude of sensory experiences in a fun, non-threatening manner. There's absolutely no harm here.
But please don't get outraged when scientists say something hasn't been studied.
Here are the AAP's recommendations:
1. At this time, pediatricians should not use sensory processing disorder as a diagnosis. When these sensory symptoms are present, other developmental disorders—specifically, autism spectrum disorders, attention deficit/hyperactivity disorder, developmental coordination disorder, and anxiety disorder—must be considered and thoroughly evaluated, usually by appropriate referral(s) to a developmental and behavioral pediatrician, child psychiatrist, or child psychologist. The American Academy of Pediatrics clinical report on the management of children with autism spectrum disorders is a useful resource to help with these referrals. 35
2. Pediatricians should recognize and communicate with families about the limited data on the use of sensory-based therapies for childhood developmental and behavioral problems.
3. If the pediatrician is managing a child whose therapist is using sensory-based therapies, the pediatrician can play an important role in teaching families how to determine whether a therapy is effective.
a. Help families design simple ways to monitor effects of treatment (eg, behavior diaries, pre-post behavior rating scales). Help the family be specific and create explicit treatment goals, designed at the onset of therapy, focused on improving the individual’s ability to engage and participate in everyday activities (eg, ability to focus, tolerate foods, and be in a room with loud noises).
b. Set a time limit for seeing the family back to discuss whether the therapy is working to achieve the stated goals.
4. Pediatricians should inform families that occupational therapy is a limited resource, particularly the number of sessions available through schools and through insurance coverage. The family, pediatrician, and other clinicians should work together to prioritize treatment on the basis of the effects the sensory problems have on a child’s ability to perform daily functions of childhood.