To the Board and Members of the American Speech-Language-Hearing Association (ASHA),
We are writing this open letter today because we are deeply concerned that ASHA’s guidelines for providing speech-language pathologist (SLP) services to the autistic population, of which we are members, are being increasingly influenced by the principles and proponents of behaviorism to the detriment of consumers.
Our first concern centers around the assumptions and ethics employed by the Applied Behavior Analysis (ABA) industry. These include the industry’s reliance on the outdated notion that autism is primarily “behavioral” in nature; the dubious scientific evidence the industry cites to try to validate its practices; the questionable actions of industry founders and leaders, including Ivar Lovaas; the emerging evidence — discounted or ignored by the industry — that ABA results in trauma; and the industry’s continuing dismissal of the autistic community when any of the above concerns are raised.
Our second concern regards the influence of behaviorism within ASHA itself. This is evidenced in several recent ASHA decisions: (1) the creation of a specialty credential in autism requiring knowledge of ABA; (2) the creation of a specialty credential in augmentative and alternative communication (AAC) requiring knowledge of ABA; (3) the provision of disproportionate speaking time to BCBAs at the upcoming 2019 ASHA Convention; and (4) the position statements spearheaded by BCBAs and adopted by ASHA in 2018 on Facilitated Communication (FC) and Rapid Prompting Method (RPM).
Our third concern centers around the disregard ASHA appears to have for autistic consumers. Moving forward, we encourage ASHA to acknowledge autistic people as the primary stakeholders in their own treatment and care; to ensure the involvement of autistic people, particularly neurodivergent SLPs, when making decisions that affect them; and to reconsider the direction ASHA appears to be moving on the use of ABA in SLP service provision.
Ethical concerns about behaviorism and the ABA industry
Over the past several years, we have observed the ABA industry gaining ground within ASHA. By allowing this to happen, your association has empowered those who hold fast to an increasingly-outdated definition of the autism spectrum, largely ignoring research that confirms what autistic people have always known: autism is not behavioral.
Advances in the field of autism are led not by ABA practitioners, but by those psychologists, researchers, speech-language therapists, and other professionals who have listened to and collaborated with the autistic population. They have acknowledged strengths and weaknesses of the autistic neurotype and explored the potential for dysregulation in motor planning and sensory experiences.
While behavior modification may provide “quick fixes” to behavioral issues, conclusions supporting ABA as a therapy are weak; self-citations in research are high; and there are no long-term studies of outcomes or well-being. Further, the autistic community has long considered ABA to be an abusive “conversion therapy” that prioritizes compliance over autonomy. Emerging research confirms the potential for trauma in those exposed to it.
Not only does the behaviorism industry refuse to acknowledge these concerns, it is also guilty of enabling much more egregious abuse.
At its March 2019 conference, the Association for Behavioral Analysis International officially endorsed the use of electric shock as an aversive at the Judge Rotenberg Center in Massachusetts, the only residential facility to still use this barbaric form of “treatment” in the United States. The BACB Code of Ethics allows for “ethical” use of punishment, including electric shock “therapy” that is administered by the Judge Rotenberg Center with its GED, or graduated electronic decelerator. The GED device is used as “aversive conditioning,” in which an electric shock is administered when an undesired behavior or reaction is displayed by a JRC patient.
Most autistic-led education and self-advocacy organizations are diametrically opposed to behavioral therapy as a treatment for autism.
Cassie Crosman, ABA survivor and autistic self-advocate, says the following about ABA and Lovaas:
ABA is legalized abuse of autistic people. It strips autistic people of their autonomy and is based on strict compliance. It focuses on autistic people adhering to desired expectations and social norms. It pathologizes and punishes autistic behaviors. It is the beginning of a lifetime of pain and trauma for many autistic children who grow up to be autistic adults with internalized ableism and PTSD as a result of subjection to strict compliance ABA therapy. There is nothing ethical, beneficial, or humane about ABA.
Lovaas, the founding father of ABA, did not even view autistic people as real people in the “psychological sense,” and ABA is based on the ableist idea that autistic people are not real people, but have to be built, shaped, and “corrected” by ABA techniques.
Autistic self-advocate Cordelia Hecker says of hearing Lovaas’s name:
I feel creeped out right away. That man [Lovaas] was a monster. He should be made the villain in a horror movie.
Autistic self-advocate John Adams had this to say:
When I hear his [Lovaas’s] name I think of those attitudes that burnt people of difference at stakes, called disabled people worthless eaters, and gathered people in camps to kill them. His name makes me cry, especially because & for all those people who may have been hurt because of his words.
To see more of how autistic people react to the name, Ivar Lovaas, see this thread on Twitter.
The June 2019 annual report on the Autism Care Demonstration (ACD) provided by the United States Secretary of Defense reports that “existing research data continues to be insufficient to effectively determine whether ABA services result in clinical improvement of children diagnosed with ASD. The research literature available regarding ABA services predominantly consists of single-case design studies which does not meet criteria for “reliable evidence” under TRICARE standards.” It additionally states that “the clinical efficacy documented in the literature does not meet the American Medical Association Evidence Based Medicine standards for Category 1 codes.”
A Cochrane review of the evidence of early intensive behavioral intervention (updated to 2017) concluded that, “There is weak evidence that EIBI may be an effective behavioral treatment for some children with ASD; the strength of the evidence in this review is limited because it mostly comes from small studies that are not of the optimum design. Due to the inclusion of non-randomized studies, there is a high risk of bias and we rated the overall quality of evidence as ‘low’ or ‘very low’ using the GRADE system.”
Applied Behavioral Analysis does not have sufficient research to define it as an “evidence based” practice and its widespread use continues to harm autistic people. Is this merger with the respectable field of speech pathology a bid by behavior analysts to draw from the rich body of evidence validating SLP techniques? Do they hope to, by proxy, become an actually-evidence-based best practice?
Influence of behaviorism within ASHA
A recent announcement from ASHA promises a coming specialty certification in autism.
As a brand new Specialty Certification Board within the Clinical Specialty Certification program, the AB-ASD will provide SLPs—who have achieved advanced knowledge, skills, and expertise beyond the Certificate of Clinical Competence (CCC-SLP)—the chance to earn a formalized credential reflecting that accomplishment in the area of autism spectrum disorders (ASD).
The SLP Neurodiversity Collective published a petition calling into question the transparency and ethics of the Board Certified Specialist in Autism Spectrum Disorders (BSC-ASD) committee. According to the petition, which has been signed by over 3000 people to date, the ASHA Community Autism Group announced on 9/20/19 that the BSC-ASD:
“…absolutely is a board certification in the area of Autism that covers ALL competencies specific to SLP’se (sic) that we should have in order to word (sic) effectively with individuals with autism spectrum disorder. This will include knowledge of many components of applied behavior analysis…”
Lewis Golinker, a disability attorney who founded the Assistive Technology Law Center, and who is a director at USSAAC, brought up these points with ASHA SIG-12 members in regards to the pending BCS-AAC, which also has significant opposition from ASHA-certified SLPs and the public. Golinker has 35 years of experience helping families obtain medical coverage for disability services. Most of the concerns raised by Golinker are reiterated at the newly-formed website, StopAACcertification.org, and can be read by clicking here.
So what is ASHA’s rationale for rolling out this ASD certification? According to ASHA’s bulletin:
Across a variety of work settings, consumers often seek the services of a professional with “expert” status, and employers are looking for staff who demonstrate that they have specialized clinical expertise at an advanced level. Board certification provides evidence that you have earned that status.
When you become a Board Certified Specialist in Autism (BCS-ASD), you will join a network of outstanding professionals who share your interests and experience. And, the BCS-ASD will provide an additional credential for career advancement in the job setting.
The inaugural board of the AB-ASD have been working toward completing a detailed practice analysis study to use its data to define the responsibilities of the CCC-SLP, BCS-ASD. It is anticipated that the BCS-ASD credential will be available by late 2019 or early 2020.
E-mail email@example.com to find out more about joining this highly skilled group of specialists!
CCC-SLPs already have expert status. This specialized “autism” certification isn’t medical; it’s behavioral. It’s ABA. This is a further surrender of autistic physical autonomy and emotional well-being to a therapy model that most (almost all) of us consider to be abusive and a violation of our human rights. This is a surrender to the predatory ABA industry.
The inaugural American Board of Autism Spectrum Disorders (AB-ASD) is headed by Lynn Koegel, co-founder of Pivotal Response Treatment, an ABA-based therapy. Her husband, Robert Koegel, was a protege of one of modern ABA’s chief pioneers, Ivar Lovaas, who was also a pioneer of gay conversion therapy. To autistic people, “Lovaas” is synonymous with torture, abuse, and erasure.
While proponents of ABA continue to dismiss arguments against ABA with claims that Lovaas was not the founder of ABA or that he represented a dated form of the current iteration of ABA, that argument does not hold water when the Koegels are so deeply entrenched in the world of ABA.
In the petition from the SLP Neurodiversity Collective, the following is cited in a list of concerns about the new certification:
The entire BCS-ASD Committee and its plans for this certification are concealed from dues paying ASHA members, despite multiple requests from for transparency. The committee members were made to sign non-disclosure agreements, and the committee has obfuscated their decisions of this certification process as requirements are being determined.
Further, StopAACcertification.org expresses the following similar concerns regarding the BCS-AAC:
- The AAC Specialty Certification Board is moving ahead with their undisclosed process. SIG 12 members were given no information about where money is coming from to hire lawyers to draft agreements or do any work that is not volunteer work.
- There are grants to support the work through the CSCC, but the CSCC won’t say who is on their own committee or what the process is for getting the money or where that money ultimately comes from.
Why is information about such important decisions as these two specialty board certifications being withheld from the dues-paying SLPs of ASHA? More importantly, how did ASHA specifically form the board certification committee for each specialty and why are both processes similarly non-transparent?
Is ASHA’s Special Interest Group 12 (SIG-12) aware that adding a higher tier of credentials specific to autism will likely force insurance companies to require that this new qualification be used in the treatment of autism, forcing CCC-SLPs who object to ABA on moral and ethical grounds to lose access to autistic clients?
Of course they are.
The SLP Neurodiversity Collective’s petition also calls to question conflicts of interest and inquires who profits or benefits from ASHA’s lack of transparency:
There appear to be potential financial conflicts of interest with the person in charge of the BCS-ASD committee. There may be more financial conflicts of interest by other members who are SLP-BCBAs, but we may never know, as the rest of the committee members are a secret to us dues paying ASHA members, and they have signed non-disclosure agreements. Will the pursuit of a BCS-ASD channel more money into the therapy programs they sell? Their books? Their speaking engagements? Who exactly benefits from the secrecy? Certainly not SLPs who are pro-neurodiverse and anti-ABA. Definitely not Autistic people.
Are these committee members the same people responsible for this new publication, ABA for SLPs, the same ones on ASHA’s decision-making committee? Koegel, of course, is among the names. In fact, many of the names in this book are those most widely regarded by the autistic community, and especially non-speaking autistics and their families, as being the most aggressively antagonistic and damaging to autistics. The price tag on this book is $54.95.
Will Nikia Dower benefit?
Conflict of Interest
An opposition between the private interests and the official or professional responsibilities of a person in a position of trust, power, and/or authority.
-ASHA Ethics Code
On the heels of these coming specialty certifications, we have also noted that nearly 20 BCBAs are presenting at ASHA’s 2019 convention on subjects such as language, feeding disorders, and trauma-informed care. SLPs, by default, are already qualified on these subjects. Education in learning methods and applied behavioral analysis to become a BCBA does not require any knowledge of these subjects, while a degree in Speech-Language Pathology does. Why are non-SLP BCBAs being granted presentation space by ASHA when an SLP could do it better?
The last area of behavioral influence in ASHA comes in the form of the positions on Facilitated Communication and Rapid Prompting Method published in 2018.
The ASHA website describes the ad hoc committee as “including researchers and practitioners in speech-language pathology or related professions who are knowledgeable about Facilitated Communication and the Rapid Prompting Method (FC and RPM).”
What it doesn’t say is that four out of five of these committee members– Bronwyn Hemsley, Russell Lang, Ralf Schlosser, and Howard Shane (all except the chair of the committee)– are outspoken critics of both methods and had already published literature in collaboration with behaviorists, focusing almost entirely on tests completed in controlled settings and completely dismissing any of the evidence to the contrary.
These were not SLPs who had experience teaching the method and who regularly engaged with people who communicate with them. They were people who had already made up their minds about the efficacy of the methods years before the committee was formed. Any chance for a fair evaluation of either method was gone before it even started.
Despite the submission of more than 150 letters from “longtime ASHA members, speech-language pathologists, occupational therapists, special educators, neuroscientists, psychologists, physicians, professors, judges, lawyers, grandparents, siblings, and—most importantly—users themselves” outlining successes with the methods and extensive criticism of the basis upon which the committee made their decisions, the positions that resulted were biased and misleading.
The effect of these position statements effectively prevents autistic people from easily accessing two methods of communication that allow fluent conversation (rather than simply pointing at pictures and being limited in vocabulary). It also delegitimizes those who have been communicating successfully with the methods for decades, calling their very lives into question. This is surely a violation of human rights.
Were James Todd, Jason Travers, Nikia Dower, or Matt Brodhead involved in these decisions? Does the entirity of the case against FC and especially RPM depend on articles either authored by Todd, Travers, or Brodhead or drawing heavily from those indivuals as primary sources of citation?
Is ASHA aware of the long history of anti-autistic sentiments from these people? Is ASHA aware of their involvement with “disseminating ABA” via anti-neurodiversity trolls? Their involvement with vandalizing and editing the Wikipedia.org pages of non-speaking autistic individuals and their creative ventures?
It is unsurprising that a stronger push for behaviorist principles followed these position statements. Those who have learned to communicate with these ASHA-maligned methods are almost universally opposed to behavioral therapy, which measures their inability to control their motor functions as intellectual disability. Having their methods of communication condemned conveniently diminishes the message that ABA is useless, even for those deemed to be “low-functioning.”
Nonspeaking autistic teen advocate Philip Reyes says this about his experience with ABA:
ABA never succeeded in helping me communicate what I really wanted. ABA was frustrating because it assumed I was the sum of my behaviors. My inability to progress was due to my body not being able to perform as expected. But I was wrongly assumed to be unintelligent. ABA did not see my problem correctly so it could not help me.
The autistic community, especially those with communication disabilities, have faced antagonism and have suffered the fallout from behaviorists who oppose the existence of sensory processing disorder, who fail to address the role of apraxia and motor coordination and planning in speech production, and who oppose the notion of presuming competence.
#AskingAutistics How much do sensory sensitivities (noise, lights, sounds, textures, etc) cause you stress and anxiety when out in the world or in groups?
Please RT for greater response.
— The Aspergian stands with nonspeakers (@theAspergianCom) November 4, 2019
Not only have these behaviorists worked to influence global perception against communication choice when it involves teaching methods like facilitated communication, rapid prompting method, and S2C (spelling to communicate), but they also have bullied individual autistic nonspeakers and their families. We have reason to believe that these same people were of primary influence in ASHA’s 2018 position statements condemning the use of facilitated communication and rapid prompting method.
Since ASHA claims a marked affinity for “evidence base,” The Aspergian has collective over 500 pages of evidence demonstrating the profuse patterns of anti-autistic behavior from the individuals we believe are primarily responsible for ASHA’s autism policy decisions– and those who stand to benefit most from them.
There is a special interest group for the Association of Behavior Analysis International (ABAI) for speech language pathologists called the Speech Pathology Applied Behavior Analysis SIG of ABAI. There’s a public-facing Facebook page for this group, and also a Facebook group called the Speech Pathology-Applied Behavior Analysis (SPABA) Special Interest Group.
In March, Nikia Dower, who admins many of the groups related to board certified behavior analysts, posted this in the SPABA group:
As far as we can tell, this was only posted in one group. Though it has “share” on it, we can’t find it anywhere else other than Nikia Dower’s personal profile.
This is problematic for many reasons, chiefly that Dower has a long history of shutting down neurodiversity advocates and blocking them. In fact, she blocked The Aspergian’s Twitter account before we were even aware of Dower and Associates’ existence. Those SLPs who advocate for listening to the autistic community or who oppose behaviorism encroaching into other disciplines (like speech language pathology) find themselves removed from groups and blocked.
Not only are neurodiversity advocates blocked, but she and her cohorts also contribute to group cultures and attitudes which equate autistic people and our allies into “radicals,” “extremists,” “emotionally driven,” “ideologues,” “science-hating,” “brainwashed,” “uneducated,” “dangerous,” propounders of “pseudoscience” and “woo.”
In fact, messaging that the neurodiversity community (that is, autistic and otherwise neurodivergent advocates and our non-autistic allies) is dangerous and cannot be included in decision-making processes about their own livelihoods have permeated the ABA-SLP SIG group ran by Nikia Dower:
The thread was longer, claiming that “they” (presumably the SLP Neurodiversity Collective) protested at ABAI. A group did protest there against electroshock torture at the Judge Rotenberg Center, but it was not the SLP Neurodiversity Collective. In fact, the SLP Neurodiversity Collective have never disrupted anyone’s presentations. To our team’s knowledge, autistic people have never disrupted anyone’s speeches.
Nikia sent an email about dangerous autistics and SLPs? “Disgusting” disruptive people? And look how these groups of thousands of people are being pushed to see autistics. You’re continuing to empower this, ASHA. Your people are in these groups. You see it.
Are these your decision-makers? Are you complicit in this “dissemination” scheme?
“Maybe the positive is how supportive ASHA is being.”
Do you see what happened there? Autistic people and our allies became the enemy to members of that group. What does this manipulation of group perception to bias tens of thousands of professionals against autistics do to the autistic children they are supposed to be supporting?
ASHA IS NOT THERE TO SUPPORT BEHAVIOR ANALYSTS AND PROTECT THEM FROM AUTISTIC PEOPLE BEING “DISRUPTIVE.” ASHA SHOULD BE PROTECTING AUTISTIC PEOPLE FROM BEHAVIORISTS.
This systematic control of group perception, through thousands of posts across several groups with membership in the thousands, paints autistic people as unworthy of being heard. Sounds like behaviorism…
We are being painted– with a startling lack of evidence– as radical extremists who are “disgusting,” irrational, and dangerous. As these specific behaviorists rank as most influential in the field of ABA, they are able to control the narrative that autistic advocates are not worth hearing.
We are not extremists. We are passionate, like Greta Thunberg… but this is human rights advocacy, not just for ourselves, but for our autistic families and friends. For our children. It is unethical to further empower the behaviorist community who summarily dismiss our complaints with, “Oh, that’s anecdotal,” or “That’s not evidence based,” or “There are some bad ABA providers, just like in any field.”
Almost every autistic person could point out, immediately, the massive flaws in this “RESEARCH-BASED” “evidence.” This isn’t evidence of anything other than that Todd doesn’t care about research design or ethics. It coincides with his non-research-based understanding of autistic stimming and reinforces (errantly) his position that SPD is not real. Autistic stimming or stereotypy is contingent on many factors– or no factors.
The real reason autistic advocates are being dismissed– and autistic competence, and autistic accounts of trauma, and autistic apraxia, and sensory processing disorder, and autistic self-determination– is because if we are seen as credible, then behaviorists will need to account for the damage they have done.
ABA does work. It’s powerful for use in advertisements and marketing campaigns to get people to buy things they don’t need, training whales to do tricks at theme parks, and getting vulnerable patrons addicted to slot machines in casinos. It’s also extremely inappropriate as intensive therapy for young children.
And again, since evidence is important, The Aspergian will be happy to provide more than five hundred pages of evidence which indicates bullying, harassment, and a total disregard for scientific evidence while simultaneously speaking from a platform of being the harbingers of “science” and “evidence based” practices.
Look what ASHA empowered to happen with the statements against FC and RPM:
The era of human rights now considers the human collateral of treatment and care and involves the voices of marginalized populations to inform practice. While other credentialing bodies have made this practice integral to their decision-making operations, you have continued to ignore the autistic community and our allies to favor BCBAs and SLP-BCBAs.
While our stance against ABA has long been firm opposition, the autistic self-advocacy community has considered experiences with speech-language pathologists to be overall positive. The ability to communicate — whether through speech or AAC — should be the first priority for autistic children, and SLPs have the right education (and lack the false assumptions) to make this happen.
If ASHA continues to allow this hostile takeover of behaviorism within its organization, the support and trust the autistic community has had for speech-language pathology will be broken.
We urge ASHA to take an ethical stance when it comes to autistic people, not a regressive one. Adopt the findings of new research into your practices; don’t reinforce outdated notions about our behavior. Help autistic people find autonomy and independence through communication; don’t collaborate with those whose therapies reward compliance and obedience and who deny the neurological implications of autism.
Furthermore, we ask that ASHA hold an open forum to allow autistic stakeholders and dues-paying ASHA SLPs to ask questions about the decision-making process behind these new certifications.
The Aspergian Team