Wednesday, May 27, 2020

“Our Own Little Worlds”

Tiny World
Photo © Jill at Blue Moonbeam Studio | Flickr / Creative Commons
[image: A wooden gate in a botanical garden, with the Austin skyline
in the background, as seen reflected in a crystal ball.]

Devin S. Turk

As I have become more involved with the autistic self-advocacy movement, I’ve found myself paying more and more attention to how non-autistic populations talk about us. I have often heard my beautiful, vibrant community described by non-autistics with words like “disease” and “epidemic.” Even if it’s not as blatant, the language our wider society uses to talk about autistic people is reflective of a deep-seated discomfort and even disgust with the non-normative. 

One example is the idea that autistic people are in our “own little worlds.” “They’re in their own little world” alludes to the intensely ableist trope of the “mysterious autistic” person, someone who is “trapped” within their “Autism-ridden” body or “locked away”in a brain that “can’t” communicate, empathize, or socially matriculate…as if Autism is a sort of bubble around a “normal” person. Additionally, the word “little” in “own little world” adds infantilization to the mix: “little” is another way to deem a person’s neurology to be childish, and therefore even lesser-than. If I am in my own world, it sure as heck isn’t “little.”

For a moment, let me play devil’s advocate and entertain the idea that there hypothetically could be separate autistic and non-autistic “worlds.” (Just go with me on this one.) Say the autistic and non-autistic mental landscapes actually do exist as opposing habitats, like the North and South Poles at the opposite ends of a planet. 

If this were true, why is the autistic landscape automatically considered less fulfilling than that of the non-autistic? Why is the realm of neurotypicality the baseline standard while the “world” of Autism is devalued and dismissed as disordered fantasy?

The “own world” sentiment expresses the gross assumption that the autistic brain is somehow inherently unhinged from reality, and that there is something deeply wrong with that. Moreover, the phrase implies that we operate from behind some kind of pane of frosted glass: the obviously-autistic person is deemed unreachable as well as unreadable. Our natural responses to the surrounding environmental stimuli (which can include various forms of stimming, echolalia, meltdowns, shutdowns, burnout, etc.) are characterized as symptoms of distorted realities or of pathological detachment. 

But, of course, nothing could be further from the truth. Many autistic people express a heightened sensitivity to sensory input, empathy, or environmental connectedness…non-autistic people just aren’t good at recognizing it.

Here, I am reminded of a video uploaded to YouTube by the late Autistic activist Mel Baggs, titled “In My Language” which has had a profound effect on myself and many others in my community. If you haven’t seen “In My Language,” watch it, and then watch it again. 

I continue to be very moved by Mel’s description of existing in continuous, wordless conversation with surrounding objects, forces, and other beings, and I also relate to it. (However, when I’m around non-autistic people, so much of my energy is allocated toward masking my autistic traits, I am forced to tune-out those conversations. I hope for this to change one day soon, but I digress.)

Even when this is not the case, when an autistic person lacks empathy, is “out-of-touch” with present social norms and values, or acts in a visibly-neurodivergent manner, their personhood remains intact. I wish these were not statements I felt I needed to include in this writing. I hope that they are obvious to every person who interacts with my community, but there are many systems, large and subtle, that aim to undermine the humanity of Disabled people.

So, it bears repeating: Autism does not render a person less worthy of the respect and dignity that our society automatically awards to non-disabled individuals. After all, my community and our “own little worlds” are not the result of my people becoming encased in some sort of Autism bubble…we are simply autistic people. We are not inherently separate from or in opposition to the “real” neurotypical world…But if we were, why would that be a bad thing?

My hope is that, as the autistic self-advocacy movement continues to blossom through and around us, our broader neurotypical peers can uplift our voices, experiences, and expressions instead of dismissing them.

Thursday, May 14, 2020

Finding the Right Speech-Language Pathologist (SLP) For Your Autistic Child

Julie Roberts, M.S., CCC-SLP
www.TherapistNDC.org

Photo courtesy Julie Roberts
[image: Ms. Roberts, a smiling white
woman with long straight blonde hair.]
After your loved one receives a diagnosis of Autism, your physician, school, family members, friends and possibly even total strangers may bombard you with (possibly unsolicited) advice for the next steps to take. One such step your family may actually want to consider is to seek the services of a Speech-Language Pathologist (SLP).

But what is an SLP? They are professionals uniquely qualified to evaluate, diagnose, treat speech, language, social communication, cognitive-communication, and swallowing and feeding disorders in children and adults. An ASHA (American Speech and Hearing Association) certified SLP must complete 400 clock hours of supervised clinical experience in the practice of speech-language pathology during graduate school, and 375 hours of that must be spent in direct client contact.

Once an SLP graduate student has finished the required coursework and supervised clinical experiences, obtained a master’s degree in speech pathology or communication disorders, has passed a national Praxis exam and has completed 36 weeks of full-time professional experience as a Clinical Fellow, only then may they obtain their CCCs (Certificate of Clinical Competence in Speech-Language Pathology).

SLPs also take distinctive graduate coursework unique to their scope of practice, in areas including: Voice Disorders, Stuttering, Motor Speech Disorders, Neurogenic Communication Disorders, Dysphagia, Language Acquisition, Articulation Disorders, Anatomy and Physiology of Speech and Hearing, Childhood Apraxia of Speech, Articulation and Phonological Disorders, Dysphagia in Public Schools, Dysphagia in Infancy, Medical terminology and scope of practice of the medical SLP, Dementia, Pulmonary Issues, and Tracheostomy and Ventilators, Pediatric Feeding, Speech Science: Anatomy, physiology and functional organization of speech. Mechanisms of normal speech production and perception with applications to the clinical setting.

Please know that therapists who are not SLPs in ABA clinics may claim to provide speech and language therapy in conjunction with ABA therapy. Beware: These clinics may have BCBAs and RBTs acting in the role of the SLP, but neither discipline is uniquely trained in communication disorders, language acquisition, AAC and feeding and swallowing. In fact, if an untrained therapist is providing therapy within the scope of practice of the SLP, they may do significant emotional and physical harm to your child because they do not have the educational background and training to determine whether something might be a motor issue, or if your child has accompanying anatomy, and physiology deficits, or if your child has accompanying health issues secondary to feeding difficulties (dysphagia, need for ENT services, a GERD diagnosis, etc.) Additionally, when your child is not physically or cognitively able to do something and a reward/punishment is in place, not only is their physical well-being in jeopardy, but their emotional well-being, too.

Parents should know that an autism diagnosis may or may not include accompanying intellectual disability, and may or may not include accompanying receptive and expressive language impairment. Licensed, certified SLPs are uniquely educated and trained to work with Autistic people in the areas of global language acquisition and expression, total communication (speaking and non-speaking communication and written expression), Augmentative and Alternative Communication (AAC), feeding difficulties and pragmatic language.

As when seeking any type of therapy, the primary goal is first, do no harm. Pro-neurodiversity SLPs practice from mind-set of “Autism Acceptance.” SLPs who practice in this manner do not “treat Autism,” they treat communication delays and disorders, provide evaluations and therapy for AAC use, provide non-behavioral, humane feeding therapy, and provide therapy for articulation, phonological processing, apraxia, voice and dysfluency issues. If your SLP tells you that they will treat your child’s autism, you will want to ask them to expand on this statement to understand how they view Autism, (and subsequently how they view your child/adolescent).

Therapy Models which are ABA derived and therefore not recommended:
  • ABA – all forms; including “new and improved” or “play-based” ABA
  • Verbal Behavior (VB)
  • The Lovaas Approach
  • Pivot Response Treatment (PRT)
  • Natural Language Paradigm (The “old” PRT)
  • Early Start Denver Model (ESDM)
  • Early Intensive Behavioral Intervention (EIBI)
  • ABA Derived Errorless Learning Therapy Models
  • Intensive Behavioral Intervention (IBI)
  • Positive Behavior Support (PBS)
  • Relationship Development Intervention (RDI)
  • Picture Exchange Communication System (PECS®)

Questions to consider when choosing an SLP:
  1. Autism: Does the SLP claim to “treat autism?” A pro-neurodiversity SLP treats the problem your child is having with communication, speech production, feeding, etc. If you SLP claims to “treat autism” you will need to ask them to clarify. Coercing a neurodivergent person to “normalize” through masking autistic traits (eye contact, mandated social scripting, tone, body language, suppress harmless stimming, etc.) is disrespectful and can cause substantial trauma.
  2. Presume Competence: Does the SLP presume competence, or do they predetermine your child’s abilities, especially your non-speaking child or and/or intellectually disabled child or adolescent? The right SLP will never predetermine your child’s potential, nor would they consider standardized assessments as solid evidence for the current level of cognitive or language abilities or future potential outcomes. The right SLP will approach therapy from a strengths-based model, taking into account their client’s special interests.
  3. AAC without Prerequisites: Does the SLP use AAC (Augmentative and Alternative Communication) liberally without gatekeeping, and as a supplement for speaking children? (AAC is very helpful during sensory overload, to communicate when overwhelmed, to ward off or get through a meltdown, to use when spoken communication is too much to handle.) Do they accept total communication? The right SLP will acknowledge and respond to all communicative attempts, including behavior; they won’t insist on one type of communication method, such as speech.
  4. Applied Behavioral Analysis (ABA): Does the SLP use ABA? The right SLP does not force compliance through the earning of snacks, check marks, behavior charts, stickers, access to favorite toys, activities, special interests, or similar. They will completely reject aversion therapy (punishment) for any situation, including the withholding of attention or affection, favored foods, drink, activities, special interests, or objects. Pro-neurodiversity SLPS don’t train human beings like pigeons, chickens, or dogs. The right SLP trusts that intrinsic motivation will guide your loved one’s therapy progress, rather than a system of external rewards (and possibly punishments).
  5. Body Autonomy: Does the SLP respect body autonomy? The right SLP will always ask your child or adolescent permission before they touch them. They will use hand under hand, only when necessary and only with the child’s consent. The right SLP will not enforce “whole body listening,” write eye-contact goals, or insist upon quiet hands. They will not force-feed. They will not suppress harmless stimming and they will look for the reason behind harmful stimming, rather than just attempting to extinguish it. Compliance over the child’s or adolescent’s body, food intake and will is never the goal; if it is, you have the wrong therapist.
  6. Sensory: Does the SLP respect and honor sensory differences? The right SLP will not force children and adolescents to comply with tolerating sensory input that is uncomfortable or distressing. A good SLP will willingly collaborate with an OT to help your child with their sensory issues.  They will heavily advocate for sensory supports and accommodations in all of your child’s environments. The right SLP will understand what a meltdown is, and what it isn’t (a tantrum) and will approach your child’s meltdowns with compassion and empathy.
  7. Neurodivergent Mentors: Does the SLP learn from neurodivergent mentors as to what therapy approaches and methodologies are respectful? Do they keep up with research conducted in partnership with and by Autistic people?
  8. Empowerment: Do they work in partnership with the client and their family to problem-solve? Do they teach self-advocacy and respect self-determination? Do they advocate for inclusion? Do they advocate for supports, accommodations and inclusion in IEPs?
  9. Emotional well-being: Does the SLP put your loved one’s emotional well-being first and foremost? Do they stop what they are doing when your child indicates distress, or do they “encourage” them to continue through the distress? Encouraging a child to continue through their distress can trauma by forcing compliance for the sake of compliance. Does the SLP hear and validate, “no?” Does the SLP try to get to the root of the problem (pain, sensory, trauma, anxiety, etc.) rather than extinguishing behavior? The right SLP will consistently put your child’s emotional well-being above their ability to comply.
  10. Kindness and Empathy: Is the SLP kind and empathetic? Do they truly believe that all children do well when they can? If your SLP uses words like: “child is manipulative,” “exhibiting maladaptive behavior,” “need to break the behavior,” “extinguish the behavior,” “desensitizing the child,” or similar, RUN.
Some SLPs may balk, becoming offended or even defensive as you ask these questions during an initial consultation. These are not the SLPs for your family. An SLP who practices with a pro-neurodiversity model will welcome your questions, and they will partner with you to empower your autistic child or adolescent along with your family. The right SLP will help your loved one meet their therapy goals while always using empathetic and respectful therapy practices.

Wednesday, May 13, 2020

Why Doesn't Respect for Communication Diversity Include Non-Speaking Autistic People?

Talking
Photo © Pier Paolo Tosetto | Flickr / Creative Commons
[image: Photo of a young child wearing a white baseball cat
crouching down and talking at a brown bunny.]

Emily Paige Ballou
chavisory.wordpress.com

One day, when I was 15 or 16, I was making my way through the crowded halls of my high school as I did most days, wondering for nowhere near the first time in my life how it could possibly be that I felt so isolated and cut off from most of my peers. Even ones I considered friends, or generally got along well with.

There was some quality of their relationships with each other that just wasn’t there when it came to me. Everybody seemed to know things I didn’t, all the time.

And finally, that day, I thought, “It’s almost as if I’m blind and deaf.” Not in the literal sense of not being able to see or hear, but in that it seemed like something important was being communicated in some way, on some kind of channel or frequency, that I didn’t have access to.

Well-meaning people would probably have tried to reassure me that no, of course that’s not what’s happening, everybody likes you, what are you talking about?

But by that point I was pretty sure I was picking up on something real, and that even if people weren’t deliberately trying to exclude me, they were communicating in ways that I had no idea how to perceive or interpret.

These days I’m told very frequently that I need to realize that “Some autistic people just can’t communicate.” But the thing is, I don’t believe we—me or anyone else or we collectively as the autism community—need to accept that at all.

In fact, I believe we are morally obligated not to accept that. And not only does personal experience tell me that just because a form of communication isn’t easy to see or hear doesn’t mean it’s not happening, I believe that even a cursory look at the diversity of communication and language as we know it exists in the world right now should make us highly skeptical of insistence that we uncritically accept that. Rather, it should humble us at the possibilities of what we don’t yet know how to see or hear, when it comes to people whose communication we don’t easily perceive or understand.

Human clinicians and researchers have developed systems to allow dogs to express themselves in English to us, and to allow horses to answer fairly sophisticated questions about their preferences using symbols. Researchers have decoded enough prairie dog language to know that they can communicate about abstract qualities like shape and color and distinguish individuals of the same species from each other. We know that whales have different dialects depending on where in he world they’ve lived and traveled. We can read honeybee dances. We know that crows can identify and remember individual humans, and convey information about dangerous humans to their flocks.

We even know now that trees and plants, even of different species, communicate with each other about danger and stress through chemical signals along fungal networks.

To make the movie Arrival (which I really highly recommend if you haven’t seen it), multiple artists, designers, and linguists collaborated to imagine how we might learn to communicate with alien visitors in a language that works profoundly differently from any language known on earth through the application of math and linguistics.

We sent the Voyager craft’s golden record out into the universe in the wild hope of making ourselves understood to another civilization that probably doesn’t communicate anything like us at all, encoded with instructions on how to read it and tell how much time has passed since its launch.

We have conducted extensive, interdisciplinary study on how best to communicate about the danger of radioactive waste to humans 10,000 years in the future, when modern English will likely be at least as incomprehensible to them as proto-Indo-European would be to most of us. And linguists have reconstructed the proto-Indo-European language itself not from any preserved written evidence but from artifacts of its grammar and pronunciation distributed throughout dozens of its descendent languages.

There is even preliminary evidence that some patients in comas, with locked-in syndrome, or previously believed to be in vegetative states, may be allowed to communicate via fMRIs.

And none of that was easy or magical. Humans don’t just come naturally wired for comprehension of the sounds with which crows and prairie dogs communicate to each other. It took years and years of observation and research and good experimental design and people committed to setting aside their assumptions and prejudices about what kinds of thought and expression non-speaking and non-human creatures could be capable of.

Indeed, just this week, the release of an innovative research study on non-speaking autistic people who use a letter board to communicate, has provided support to the position that those non-speaking people are communicating their own thoughts, and not being directed by their assistants.

So the thing is that, knowing what I do about the diversity of non-speech communication that exists here on earth, and about the innovation we have already shown in enabling communication by unconventional means, no, I cannot sit here and accept without serious question the presumption that “Some autistic people just can’t communicate at all.”

And often when I ask whether a child has had an AAC evaluation, or whether they’ve had access to a keyboard or letter board or ASL, some understandably frustrated parents will say “No, you don’t understand, we tried all of that and he can’t use it” but I’m really asking people to look even more deeply and broadly than that. Not only because it may truly be the case that some autistic people will never be able to use a device or master a sign language, but because some of the communication I’m talking about might not be the kind that can be readily translated by a machine or into conventional language.

Autistic people find ourselves reminded often that an estimated 80% or so of human communication is non-verbal, and that’s why we have so much trouble understanding neurotypical communication if we’re trying to rely on what people say out loud. As I intuited when I was a teenager, the "out loud" is only a fraction of the communication occurring, like visible light in the electromagnetic spectrum.

But somehow we’re not supposed to believe the same thing about autistic people—that there may be huge swaths of someone’s expressive communication that isn’t literal spoken or written language. When it comes to non-speaking or non-verbal autistic people, suddenly we’re supposed to believe that the impairment or absence of that verbal 20% means that the other 80% isn’t there at all. And that’s an assertion for which we don’t have an evidence base that makes me confident in our ability to write off the possibility of improved communication with some of the most vulnerable autistic people among us, in good conscience.

What I am not saying is that with the right technology, every non-speaking autistic person would be able to communicate articulately or even conventionally in verbal language. What I am saying is that we can and must do better than we have been for people with the least well-understood needs for communication support. For some autistic people, that may mean giving someone the means to access more or less conventional verbal language. For some, it may mean that we need to vastly broaden our own range of perception for what the expressive medium of their communication may be.

When we fail to consider that someone’s communication may simply be completely opaque to us, particularly in light of research showing that autistic people’s neurologies may all be utterly unique, not only between autistic and non-autistic people’s on average, but completely distinct even from each other’s, then “Some autistic people can’t communicate at all” isn’t something we have the basis to know.

When we are far more willing to believe in the capacity for communication of animals and aliens than we are in that of non-speaking and intellectually disabled autistic people, and extend our research and creativity towards mutual understanding, no, I have to reject the assertion that “Some autistic people just can’t communicate,” or at least regard it with the utmost skepticism. I believe that to be a failure of imagination, ethics and research priorities on our part, not a fact.

Tuesday, May 12, 2020

Autistic Replay: Both Involuntary and Misunderstood

Photo © Dean Shareski | Flickr / Creative Commons
[image: Close-up photo of a remote control's
"Replay" and "Rewind" buttons.]
Emma Dalmayne
www.Autisticate.com

Content note: This article discusses trauma and an infant being assaulted

Have you ever watched an autistic individual joyously laugh or begin to sob broken heartedly for no reason apparent to yourself?

It’s very likely they are replaying a memory of an event that has passed, possibly as recent as that day or even months or years ago. We can feel the exact same intensity that we felt at that moment, see the same sights, smell the same smells, and hear the same sounds.

Depending on if it’s a pleasant memory, we may sit there smiling, giggling, or laughing uproariously—to the amazement of anyone nearby. Similarly our distress is absolute if it’s a depressing memory: tears will run, and the devastating sadness experiences at that time will be identical.

Can we stop replays? No.

Can we control them? No.

Replays can be triggered by a sight, or a smell similar to one we would have smelt at that time. Even a sound like an alarm or a song can all provoke a truly realistic memory reel that will begin playing automatically. I was unfortunate enough to be scrolling through Facebook one day, and saw a video of a baby being assaulted.

It has replayed in my head for three days.

I looked the incident up, and found the child minder involved had been arrested that day and was now in prison, plus the baby had recovered—yet it gave me scant relief. I could feel the devastation I imagined the baby could feel, and the actions were like a non stop preview whether my eyes were closed or open. I couldn’t eat for two of those days. I couldn’t sleep for all of them.

Similarly, a happy memory of a little baby chimp statue in a shop window that made me giggle can still make me happy till this day, the giggles erupt and the bubble of joy I felt is mimicked to perfection.

So, please: If your child or adult autistic is seeming to have a replay, leave them alone.

If they seek comfort, give it—but otherwise leave them to go through the literal visual, auditory, and sound reel they are witnessing. It’s involuntary, and we need to replay it, to get it out.

If your child or adult autistic seems very upset by what they are replaying, and you can narrow it down to something they have seen on the TV or their tablet/computer, one option that works for us is to get a cloth and wipe the device down firmly in front of them. Clean the keyboard and even surrounding desk, as this will visually cleanse the area. Wipe the computer viewing history. I have ripped a video to pieces after seeing something distressing on it, and binned it—but even that didn’t work as the trash bin was still in the house. Once I’d emptied the bin I felt better.

In our house it has even helped to snap offending DVDs in half. This may not work for everyone so do be sure to know it is the the correct approach to take with your child, in case it actually causes more distress. Putting the DVD into a box and putting it away in another room is also an option—which gives the child time to decide if they ever wish to view it again or not.

If your child or adult has memories of bullying, or something else that upsets them, another approach is to ask them to write about it or draw it—then either bury the paper, or tie it to a balloon and let it go. You may have to do this several times if it’s a particularly distressing memory.

Alternatively if they are laughing and giggling in, glee join in! We need more of that in the world and a joyful memory shared is something to be cherished.

Monday, May 11, 2020

Conflicts of Interest in Early Autism Intervention Research: A Conversation with Dr. Kristen Bottema-Beutel

Photo courtesy Dr. Bottema-Beutel
[image: Formal photo of Dr. Bottema-Beutel, a smiling white
woman with medium-length side parted brown hair.]
Advocates of early autism interventions often claim such approaches are "evidence based," whereas critics have long pointed out individual flaws in cited studies.

We were glad to learn about Dr. Kristen Bottema-Beutel's analysis of general conflicts of interest in early autism research, and talk with her about how her findings complicate assertions about being early autism interventions being evidence based, and what else she and her team discovered.

----

Thinking Person's Guide to Autism: Can you tell us why you decided to pursue this analysis of conflicts of interest (COIs) in early autism intervention research?

Bottema-Beutel: The short answer is that I’ve been following Michelle Dawson on Twitter (her handle is @autismcrisis). Michelle is an autistic researcher who has been sounding the alarm on undisclosed COIs for more than a decade—before I even entered graduate school. Michelle gives really insightful critical commentary on a huge amount of autism research, and regularly tweets about intervention studies that do not disclose when the researchers could potentially have something to gain from positive findings.

Once you start looking, it’s hard not to notice that a very large portion of intervention research is conducted by the same people who designed the interventions, or who provide the intervention. This isn’t necessarily a problem, but you do at some point want independent replications, which means that researchers not associated with developing or providing the intervention conduct studies to determine how well they work. There are many decisions that go into designing, implementing, and interpreting intervention studies, and researchers might not always be aware of making decisions that ‘bias’ the study—which means they show positive results even if the intervention doesn’t have a positive effect.

A few years ago, my colleagues Micheal Sandbank (UT Austin), Tiffany Woynaroski (Vanderbilt) and I decided to do what’s called a ‘meta-analysis’, which involved searching for all the studies we could find on interventions for young children with autism, and combining all the data together to see if we could statistically determine which types of interventions have positive effects. These results were published a few months prior to the COI study.

While we were doing this meta-analysis and had all of the literature together in one place, it seemed like a good opportunity to systematically explore what Michelle had been noticing and pointing out for a long time. My graduate student Shannon Crowley worked on both of these studies, and was instrumental in coding COIs and interpreting our results.

TPGA: Proponents of early autism interventions often describe them as “evidence-based.” Does your analysis complicate these claims?

Bottema-Beutel: I think it does. One of our findings from the meta-analysis is that we haven’t conducted enough high-quality studies on any given intervention to make bold claims about what works. The term ‘evidence-based’ is a bit arbitrary, and different research groups have different quality standards they use when categorizing an intervention as evidence-based.

Another perspective I gained from following Michelle Dawson is that conducting high-quality research is a social justice issue. Autistic people deserve research that adheres to quality standards that are agreed upon by researchers across disciplines—we shouldn’t have a separate set of lower standards that we only apply to autism research.

Studies should also be conducted by researchers who are transparent about their COIs, and how these COIs could potentially bias results. Having a COI does not automatically mean that your research is biased, but properly disclosing a COI invites additional scrutiny of your methods and interpretations, which is a good thing. We found research from other areas in psychology where COIs were fully disclosed, and the researchers provided very detailed descriptions of how they built in safeguards in their study designs to ensure that the COIs didn’t compromise the study findings. We could do this in autism research.

One thing I think I should add here is that not all of the responsibility for COI under-reporting falls on researchers. Part of the problem is that the journals where these studies are submitted have rather vague policies about which COIs should be disclosed. We’re hoping that with our paper, researchers will have a bit more information about what constitutes a COI, journal editors will improve the way they communicate COI disclosure policies to researchers, and the entire submission process will involve more vigilance to ensure researchers disclose COIs properly.

As I mentioned before, the presence of a COI doesn’t necessarily mean the study is biased. But, if COIs are more readily disclosed, we could determine which kind of COIs are associated with researcher bias, and researchers could then take steps to ensure that those biases don’t influence their study.

TPGA: You examined eight types of COIs. What were your criteria for choosing them?

Bottema-Beutel: We chose these eight because they were examined in similar studies in other fields, and because they corresponded with the types of COIs that researchers studying interventions geared towards young children with autism might be likely to have.

TPGA: Were there other COIs you didn’t include, and if so, why?

Bottema-Beutel: We didn’t actively exclude any COI categories that we were able to find. One COI that we have a feeling is pretty prevalent but that we were unable to find much evidence for is the acceptance of speaker fees. It's pretty common for researchers to be asked to present their work, especially if they publish research showing promising intervention results. Sometimes, these invitations come with stipends to compensate researchers for their time.

We found only one study that disclosed an author had received speaker fees, and it turned out the speaker fees were for speaking on a topic unrelated to the intervention being studied. There’s no real internet record of researchers receiving speaker fees (unlike many of the other COIs we examined), so we were unable to get good data for this.

TPGA: Your analysis goes back to 1970. Did you notice any trends, such as decreasing or increasing COIs over time?

Bottema-Beutel: This is a really great question! I wish we could do an analysis like this, but because most of our data is comprised of undisclosed COIs that we located through internet searches, we probably would see that all of the COIs we tracked increased over time, but only because they were better documented on the web as researchers’ web presences increased over time.

TPGA: Do issues with COIs correspond with which type of intervention (ABA, behavioral, etc) is being studied?

Bottema-Beutel: Newer intervention approaches, like technology-based and "naturalistic-developmental-behavioral-interventions" (a combination of approaches that was formally defined as an approach just a few years ago) have a relatively higher number of COIs related to the developer of the intervention also being the researcher. In addition to newer studies just having COIs that are easier to find, this is likely because a second generation of researchers hasn’t been in the field long enough to secure the big grant funding required for an independent evaluation of these approaches.

One issue preventing a complete answer for this question is that our study only examined "group design" studies, and not all intervention approaches tend to be examined with group design studies. For example, the vast majority of the ABA literature uses a different approach, called single-case design. We didn’t look at any of this research, but if we had, we might find many more COIs in this group of studies.

In an online conversation, an ABA practitioner and researcher pointed out that many behavioral researchers are also practicing clinicians, and that they are not generally aware that this dual role inherently constitutes a COI. This is a big problem in my opinion, and means that researchers need to be better trained about this topic.

In the group design research that we did review, all of the different intervention types we examined were associated with at least some COIs, except cognitive behavior therapy—but this approach only had a single study involving young children with autism.

TPGA: You included a list of studies analyzed in the supporting information—do you intend to also release the coding of undetected COIs for each study at some point or make that information available for secondary analysis?

Bottema-Beutel: If any researchers wanted this information for secondary analysis (or to simply check our work) we would be happy to share it with them.

TPGA: What do you consider the takeaways from your analysis, especially for families considering early autism interventions?

Bottema-Beutel: Our take home message for families is that they should continue to use intervention services that are working for them. However, families should also be informed about what a conflict of interest is, and should consider whether they are being encouraged to use a particular intervention by someone who has a conflict of interest.

Our message for researchers and funders is that they should prioritize conducting high-quality, independent replications of the interventions that we currently think show promising evidence of effectiveness. I know of some intervention proponents who claim that a particular intervention approach has the "best" evidence base simply because they have more studies, but volume alone isn’t convincing to me. We need to look at the quality of the evidence, and the extent to which we think the evidence might be biased by COIs.



Kristen Bottema-Beutel is an Associate Professor in the Teaching, Curriculum, and Society department in the Lynch School of Education and Human Development at Boston College; her research interests are in social interaction and development in autistic children and youth.