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The Neurodiversity Movement: An Overview for Autism Service Providers

The Neurodiversity Movement: An Overview for Autism Service Providers
Julie Roberts, MS, CCC-SLP
November 7, 2022

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Editor's Note: This text is a transcript of the course, The Neurodiversity Movement:  An Overview for Autism Service Providers, presented by Julie Roberts, MS, CCC-SLP.

Learning Outcomes

After this course, participants will be able to: 

  • Identify one primary goal of the neurodiversity movement.
  • Describe at least one practice that is considered ableist in a neurodiversity-affirming therapy model.
  • List three practice priorities for neurodiversity-affirming service providers

Sources for This Course

Sources for this course include my own clinical experience for the past 23 years, autistic lived experiences and firsthand accounts, and contemporary research (including sensory, the double empathy problem, autistic masking, and diversity in social intelligence). Due to time constraints, I won't address the autism research that is listed above, but all of the research topics heavily influence how I practice as well as how I developed a neurodiversity-affirming therapy framework. 

I'm a formally late-identified autistic SLP. Disclosing such personal information to a group of professional peers puts me in a pretty vulnerable position because of our profession's clinical and social bias, stigma, and prejudice against autistic people, as well as the absurdness perpetuated by some SLPs, other autism evaluators, and researchers suggesting that autistic people don't have feelings, are not capable of empathy, or are lacking in theory of mind. Some might consider an autistic SLP's coming out as professional suicide. And it's exactly why many of our autistic peers don't disclose. Sometimes it's difficult for me to disclose, especially in my immediate work environment because of the stigmas about autistic people. But I choose to do it anyway to both re-humanize autistic people in the eyes of my professional peers and to make it safer for autistic SLPs to live their authentic lives.

This course does not purport to speak on behalf of all autistic people. I'm keenly aware that as a privileged, white, educated, autistic woman who can somewhat mask for periods of time, my lived experiences are very different from autistic people with intersectionality variables of race, ethnicity, sexual orientation, and disability. This course is an overview of the goals of the neurodiversity movement as defined by the majority of autistic self-advocacy organizations. It also provides an overview of how SLPs can better provide services aligned with this movement.

For some of you, the content of what I say may feel very uncomfortable, possibly challenging both professionally and even personally. Some may even be offended, and that's not my intention. Others might be turned off because of the way I present. Even though I have been professionally educated and trained as a licensed, credentialed SLP, and have gone through social skills training as an adult in my early 40s, I still present with autistic social skills no matter how hard I try to mask it. Those who know me, know that I use direct language with very little fluff. Some people may perceive my tone as not friendly enough or light enough, or they may be upset because my tone indicates that I have really strong feelings about what I'm saying. And regarding this course, it's true, I do. I've spoken this way my entire life, and I've been tone-policed as a young child throughout my teens and now even as an adult, despite having formal training in neuro-normative social communication and pragmatic language.

My personal lived experiences have taught me that some people really dislike how autistic people communicate, and there's even research to back this up. In 2017, a study was conducted by Dr. Noah Sasson at the University of Texas Dallas, which is my alma mater. Neurotypical peers are less willing to interact with those with autism based on certain things. And I will go more into depth about this in the next session.

Dr. Sasson's work was the very first of its kind to demonstrate that observers' negative first impressions of autistic people engaging in real-world social behavior were found to be robustly less favorable than those who have matched neurotypical controls. The study found that negative first impressions of autistic adults occurred only when audio and/or visual information was present, and not when just a transcript of their speech content was evaluated. It's not what they said, but how they said it. My hope with this course is to flip the pathologizing, behaviorist narrative of autism we were all taught in grad school and are still taught in professional development events and to radically reframe the concept of ethical and respectful SLP service provisions to neurodivergent people.

A couple of notes before I continue, I'll be using identity-first language throughout this course because it's the preferred language of the majority of adult autistic self-advocates. I will go into that further in a bit. Some of the information specifically pertains to autistic people because it's a neurodiversity that most pediatric clinicians often encounter in their careers, the neurodiversity movement was started by autistic people, and my own lived experiences as a late-identified autistic woman who was still autistic before I was formally diagnosed impact how I practice as well.

When I began advocacy work to eliminate the dehumanization of autistic people in 2017, the constant theme from ABA and social skills providers was that their methods are evidence-based. So, if a therapist wasn't practicing with these methods, their therapy didn't meet the standards for evidence-based practices. I quickly learned to put my healthcare compliance background to work. I knew that to begin a sea of change in therapy practices, I had to prove that my proposal was evidence-based.

First, I needed to seek out and cite the research to support what I already knew, add my professional experiences with and observations about my clients, and then consider first-hand accounts of autistic and other neurodivergent people themselves, including my mentors, my clients and students, and my own lived experiences. Over the last four years, I have studied over 400 white papers, research, and scholarly articles that support activism to stop conversion therapy, which is turning autistic human beings into someone other than themselves.

I became even more emboldened with my advocacy work because I could prove on paper, so to speak, that the neurodiversity-affirming therapy recommendations I was making indeed meet the conditions of evidence-based practice. As I go through the content, I will highlight what neurodivergent-affirming practices encompass. I hope you will reflect on ASHA's definition of evidence-based practice and see that what I am presenting truly does meet EBP criteria.

Why Use Identity First Language?

Why do I use identity-first language? To this day, it still shocks me when I see professionals, mostly online but also in professional environments, correcting autistic people about the terminology we use about ourselves. It demonstrates, at the very least, a lack of cultural competence and humility. According to Autistic Self Advocacy Network, in the autism community, the majority of self-advocates and their allies prefer terminology such as autistic, autistic person, or autistic individual because we understand autism as an inherent part of an individual's identity.

The very same way we would refer to being Muslim, LBGTQIA, gifted, or Jewish, consider autistic person versus person with autism. We say person with cancer versus cancerous because cancer is a disease that ultimately kills if it's not treated or put into long-term remission. There's absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not part of a person's identity or how an individual experiences and understands the world around them. Cancer is not all-pervasive. However, autism is not a disease, it's a neurological development condition that is, yes, disabling in many and varied ways, primarily due to communication, societal, and environmental barriers. Autism is lifelong, and there is no cure. And many autistic people, including myself, would not want to be cured as we would essentially lose the essence of who we are. Autism defines how an individual experiences and understands the world around them. Autism is all-pervasive. So, that's why advocates generally choose to use identity-first language.

What is Ableism?

Ableism is discrimination and social prejudice against disabled people. Ableism perpetuates stereotypes and generalizations about disabled people, and communicates the message that disabled people are broken and need to be fixed. Ableism presumes that non-disabled people are superior forms of human beings, and because of that, disabled people should aspire to be like them. 

What would ableism look like in therapy settings? It could look like setting goals with targeted outcomes of "curing" or at least masking autistic traits. It's neurotypical social skills training, failure to consider and provide equitable access and inclusion in all settings, requiring prerequisites or gate-keeping access to AAC, and failure to respect self-determination or body autonomy. It's not providing the right to refuse, even if your client's a child, and infantilizing clients or students or patients in a SNF, hospital, or post-acute rehab center.

I'd like to share a story.  One of my best friends was unexpectedly hospitalized for a medical event and needed to be evaluated by an SLP for swallowing. My friend is my age. The young SLP came into the room and spoke in this sing-song, chirpy voice that most of us know. My friend was not only highly insulted, but lost trust in this clinician.  My friend asked me if all SLPs talk this way. Infantilizing a non-speaking client or someone with a cognitive disability, in the same manner, is just as ableist.

Neurodiversity Terminology

The following is for reference, I am not going to read through it. 

  • Ableism: Discrimination against people with physical, intellectual, or psychiatric disabilities, and a belief disabled people need to be ‘fixed.’ Center for Disability Rights: http://cdrnys.org/blog/uncategorized/ableism/
  • Ableist: Social prejudice against people with disabilities based on the belief that typical abilities are superior and that disabled people need to be ‘fixed.’
  • Allistic: A non-autistic person.
  • Ally: a person with privilege on a particular axis who makes a conscious choice to work against oppression on that axis.
  • Neurotypical/Neuromajority: A person who is not Autistic, ADHD, etc. Abbreviated as ‘NT.’
  • Neurodivergent/Neurodivergence: Differences in mental or neurological function. (Examples include Autistic, ADHD, Dyslexia, Dyspraxia)
  • Neurodiversity Movement: A social, political, and human rights movement led by Autistic, Neurodivergent, and other disabled people with the end-goals of acceptance. It is a Cultural Movement.

A quick note, I constantly hear or read providers incorrectly using the word 'neurodiverse' to describe an autistic or other neurodivergent person, such as "my neurodiverse student or neurodiverse clients." Neurodiversity encompasses all human neurotypes, autistic and non-autistic. A neurodiverse group includes various neurotypes, both neurotypical and neurodivergent. Individuals can't be labeled as neurodiverse because an individual is not a group. A neurodivergent group is a group of neurodivergent neurotypes, autistic ADHD, dyslexic, et cetera. A neurotypical group is a group comprised of non-autistic, ADHD, dyslexic, etc people.

What is Neurodiversity?

In a nutshell, neurodiversity is a form of human diversity; human diversity of neurotypes. Neurodiversity acceptance means that society, including clinicians, accepts neurodivergent people, as examples of diversity in human beings. Neurodiversity is not to be confused with the neurodiversity movement.

Acquired Neurodiversity

What is acquired neurodiversity? Acquired neurodivergence can be acquired and transient or acquired and chronic. Acquired neurodivergence is different than applied neurodivergence. Applied neurodivergence is a neurological difference in the non-pathological sense, such as autism or ADHD. You're born with it, it's a natural state, and it's not curable.  But acquired neurodivergence would include things like brain injury or post-CVA, in which the patient has the potential to heal or worsen. I am including this explanation because a lot of us work with pediatric, adult, and geriatric populations on a daily basis. These patients, clients, and students are entitled to the same rights to dignity, self-determination, and personal agency as any other client or patient.

Embedded throughout this course is the theme of dehumanization of neurodivergent and acquired neurodivergent humans. These are human beings who have not provided consent to have their personal agency, their dignity, and their body autonomy stripped from them because of what's written in a therapy plan of care, an IEP, or a behavior plan.

Neurodiversity and Intersectionality

Intersectionality is a term coined by a law professor, Kimberle Crenshaw, to describe the double bind of simultaneous racial and gender prejudice. When we encompass intersectionality within the framework of neurodiversity, we would consider a marginalized person's intersectionality rather than just focusing on one characteristic or identity at a time like their gender, race, ethnicity, socioeconomic status, sexual orientation, or disability status. Intersectionality highlights the complexities of a neurodivergence person's experiences of marginalization, inequality, and power structures going well beyond their disability.

We all know that the SLP world is decidedly white and homogenous, and we all know that this needs to change. Research shows that as therapists, our biases may and often do predict our clinical decisions, including diagnostic decisions and therapy approaches much more than we realize. As licensed credential therapists, we may contribute to structural racism and bigotry even if it's done inadvertently. Neurodivergent people come from all racial, ethnic, socioeconomic, and cultural backgrounds.

Financially comfortable white men and boys are much more likely to receive a diagnosis than are women, other races and ethnicities, or economically disadvantaged people because of differential access to healthcare. Neurodivergent people with intersectional backgrounds are often missed in diagnosis, and research backs this up. And often, their behavior is attributed to someone's moral judgment rather than a view of disability. For example, a black child who exhibits meltdowns in class might be labeled with Oppositional Defiance Disorder while a white child would be more likely to be identified as autistic.

Interweaving intersectionality into our practice framework is a continual process of self-reflection and self-critique where we not only own up to our unearned privilege and acknowledge our biases but actively work towards eliminating social and structural barriers for marginalized people. I have to do self-reflection work with humility continually because sometimes I don't even realize my privilege until after the fact. Truly allied clinicians within the neurodiversity movement work to actively stamp out racism, homophobia, transphobia, ableism, antisemitism, Islamophobia, anti-immigrant bias, white supremacy, inequitable access, and socioeconomic structures.

Neurodiversity Movement

This brings us to the neurodiversity movement. First and foremost, the neurodiversity movement is a human rights movement for social justice. The endgame of this movement is acceptance and the end of subversion and oppression for all neurodivergent people. The neurodiversity movement is led by neurodivergent people themselves, not their allies and not providers.

Agencies like Autism Speaks and the Autism Society of America routinely speak over and ignore the voices of autistic people. Several disability self-advocacy organizations, such as the Autistic Self Advocacy Network and some neurodivergent SLPs feel that ASHA speaks over neurodivergent voices too. Some service providers might consider themselves to be allies, but if they speak over or drown out the voices of autistic or otherwise neurodivergent self-advocates, overriding their concerns or objections to therapy practices because the provider is an autism expert or behavior specialist, and believe that their education and credentials entitle them to decide what's best for neurodivergent clients, even over the objections of neurodivergent people themselves, then the provider can then become a subjugator rather than a helper.  Regarding our therapy practices, the activists within the neurodiversity movement seek to remove existing service provider stigma, bias, mistreatment, forced compliance (this is a big one), and even abuse imposed on non-consenting neurodivergent people in the pursuit of clinical normalization.

History of the Neurodiversity Movement

The neurodiversity movement is considered to have begun around the early 1990s. This is when autistic people had typical socialization barriers removed for the first time because they had access to the internet, which became accessible to a wider range of people. In the mid-'90s as access to the internet grew, it empowered autistic people to connect and share ideas via accessible text-based communication, which many autistic people, even speaking autistic people, sometimes prefer. Autistic culture and the self-advocacy movement developed and grew during this time as a result. Social media was and continue to be the catalyst for building activism in neurodivergent communities.

Then, we move to the 2000s, and online communication enables these autistic communities to collectively protest, advocate, and bring about essentially the neurodiversity movement. In the last two years or so, research conducted by autistic researchers or in co-production with autistic people has helped to move the neurodiversity movement forward by essentially providing evidence for the lived experiences of autistic people.

Neurodiversity Movement Leads to Ethical Debates

There are a few ethical debate themes activists encounter within the neurodiversity movement, and these are themes that we see over and over again. The debates are usually between autistic, other neurodivergent self-advocates, therapy providers, and some parents regarding the need and services autistic and other neurodivergent humans need. Because research is catching up with client perspective and authentic lived experiences, the concept of neurodiversity-affirming therapy is emerging. But as researchers know, there's such a thing as an evidence-to-practice gap. Some studies estimate this gap as an average of 17 years. But when we're talking about human rights, reducing trauma, respecting personal agency and self-determination, SLPs need to move faster. While this may be new research, we can't wait for it to trickle down 17 years from now because we're talking about the impact of our therapy practices on the well-being of human beings.

What is Neurodiversity Lite?

Performative neurodiversity or Neurodiversity Lite is the appropriation of the neurodiversity movement to market one's self and profit either directly or indirectly through the sales and materials or services using neurodiversity as a branding that helps the public reach your materials or services.  It co-ops human rights and the social justice movement for financial gain. Companies and clinicians adopt neurodiversity buzzwords in their advertising and on their websites. They might get part of the message right, like saying we shouldn't write goals for eye contact anymore, autistic play is authentic play, or that goal should focus on self-advocacy and saying no. But they miss the bigger picture of the human rights and social justice movement while keeping the focus on themselves, their products, and their bottom line. What happens is performative neurodiversity sabotages the actual neurodiversity human rights and social justice movement and minimizes the voices of those who have fought for neurodiversity social justice for decades. They have to sit back and watch their human rights movements strategically being co-op'd and turned into cash cows. When industries, companies, and individual therapists do these things, they aren't amplifying the voices of the autistic advocates on the front lines leading this human rights campaign, they're amplifying themselves and their businesses.

Major Goals of the Autistic Rights Movement

When considering neurodivergent-affirming practices, it's helpful to know what the primary autistic rights goals are within the entire neurodiversity movement. The first and foremost goal of this movement is the acceptance of autistic people's patterns of behavior and social communication differences. They want to flip the pathology paradigm of autism (we'll explore this more later).  They want to teach each neurotype, that is autistic and non-autistic people, about each other's neurotype communication skills, motivations, and behaviors without expecting the neurodivergent person to adopt them.  They want the creation of social networks, events, and organizations that allow autistic people to collaborate and socialize on their own terms, not led by a therapist with social skills goals or by a behavior specialist who wants them to adopt neurotypical social communication. They just want to have these groups on their own. Finally, they want recognition of the autistic community as a minority group and a culture.

Medical Model of Disability versus Social Model of Disability

Julie Bascom gave the keynote in 2021 at Drexel University.  Julia is the Autistic Self Advocacy Network's (ASAN) executive director.  ASAN is the largest, but not the only autistic self-advocacy organization in the United States. In her keynote, she discussed the medical and the social model of disability, and how both models address disability as a problem that needs to be solved, but they focus on very different things. In the medical model of disability, the person's disability is a pathology to be solved through medical services such as treatment, surgery, medicine, therapy, and other medical curative measures. A medical model can also involve institutionalism. In the medical model of disability, the focus is on cure and prevention. For example, when we're talking about autism, the bulk of current autism research funding goes towards investigating basic biology, including hereditary information and DNA studies, and exploring the causes of autism with the explicit goal of preventing future autistic people from existing.

In contrast, a social model of disability focuses on identifying the artificial barriers imposed by a society that generally doesn't value accessibility. We're talking about breaking down barriers to self-advocacy, personal agencies, self-determination, inclusion, equitable access, increasing supports, including communication supports, home and communication community-based services, and access to education, transportation, housing, employment, and fair wages. The social and medical models of disability aren't an either/or situation. If an illness, injury, or disease can be helped with medical treatment, then absolutely a medical model is what's needed. But for a neurodevelopmental condition, which can impact every area of life for neurodivergent people, it's not their neurodivergence that needs to be cured, but rather the barriers around them that need to be removed.

I'm assuming the majority of SLPs completing this course has a general knowledge of the DSM-5 description of autism, so the following information is for your reference.

Much of the world defines autism by the medical model of disability: 

  • Qualitative deficits in social interaction
  • Qualitative deficits in communication
  • Restricted repetitive and stereotyped patterns of behavior, interests, and activities

Autism within a neurodivergent-affirming, social model of disability framework:

  • Autistic differences in social interaction
  • Qualitative differences in communication
  • Autistic patterns of behavior, interests, and activities

What's important to highlight about a social model of disability is that it does not minimize the very real challenges that autistic people experience secondary to their autism, often on a daily basis. In the social model of disability, SLPs would address these real challenges by first presuming competence, and providing access to robust communication systems and supports without gate-keeping or judging cognitive abilities to be too impacted. SLPs would provide supports, accommodations, and modifications to address physical and environmental barriers, including sensory barriers. We wouldn't pathologize or stigmatize naturally occurring autistic traits like stimming, lack of eye contact, or social communication presentation. We wouldn't provide treatment to make the autistic person look less autistic.

We know there's no cure for autism. If your treatment worked to reduce the signs or symptoms of autism, it's basically because the autistic person is masking and your treatment may have inadvertently harmed them in the process. Masking is a growing area of research, and I address it more in SpeechPathology.com course 10273, "Social Skills "Training": A Neurodiversity-Affirming Framework." In the social model of disability, the priorities are acceptance and accommodation, and all neurodivergent-affirming practices start with the social model of disability.

Barriers

Some of the barriers that we might see include:

  • Attitudinal barriers
  • Organizational systemic barriers
  • Education barriers
  • Communication barriers
  • Physical barriers - including environmental
  • Policy barriers  - such as denying reasonable accommodations to help a person perform better in a classroom or essential functions of their job
  • Income barriers - such as autistic people working for sub-minimum wages
  • Transportation barriers
  • Societal barriers - expecting autistic people to act and interact in the same manner as neurotypical people to be accepted (also called 'conditional acceptance')

Eliminating these barriers is the primary focus of the majority of autistic and other disabled self-advocacy organizations in the United States and around the world. SLP clinical outcomes for autistic clients have historically, and even today, been focused on outcomes of normalization. Therapy plans are designed to reduce autistic symptoms, resulting in the persistent dehumanization of autistic people because they don't fail to hide their autistic characteristics.

"Autism Treatment"

The dehumanization of autistic people is prevalent in clinical settings, academic research, and seemingly authoritative books about autism in media reports, educational settings, social services, fundraising narratives, and social skills training for autistic youth and adults. This deficit-focused medicalized approach to autism leads to treatments, therapies, and educational approaches that do not respect the humanity, autonomy, or dignity of autistic people. This is especially true for many treatments forced upon autistic toddlers and young children. In January 2022, Kerns et al published a study in the journal, Autism, identifying the primary sources of trauma as self-reported and reported by parents and caregivers of autistic people. This study found that autistic people live in chronic trauma because of bullying and emotional abuse, physical restraint and sedation, loss of autonomy and constant scrutiny, diminished self-determination, sensory hypersensitivity, and environmental barriers.

Autistic adults as well as caregivers said that enhanced attention and hyper-focus on the management of everyday autistic behaviors such as restricting or extinguishing the autistic person's movement of their body, stripping away their personal agency and self-determination for even the most basic decisions of daily life, such as how to play, what they can do in their recreational free time, when and where and what to eat, toileting, forced inclusion on someone else's terms and forced seclusion, cause trauma for many autistic recipients.

Specifically, ABA was a source of trauma. Why is ABA treatment not aligned with the goals of the neurodiversity movement? Many self-advocates consider this to be conversion therapy.  I want to provide a brief history of conversion therapy. In the 1960s and '70s, psychologists at UCLA operated two behavior modification programs, one aiming to eliminate feminine behaviors in male-bodied children (i.e. gay conversion therapy) and one targeting autistic children's behavior.

In the early 1970s, 5-year-old Kirk Murphy underwent therapy for his effeminate behavior in a federally funded experimental program at UCLA under the supervision of Dr. Ole Ivar Lovaas and George Rekers, a psychology graduate student. This little boy was placed alone in a room with a one-way mirror and instructed to choose between two sets of toys, masculine and feminine. His mother was then invited into the room and instructed to ignore her son when he gravitated toward feminine toys, but to shower him with attention if he played with the more masculine toys.

At home, the 5-year-old child was subjected to a token system and rewarded with poker chips for positive and negative behavior. So, blue chips were given for masculine behavior, and he could trade those in for rewards like candy. Red chips, however, were given for behavior deemed feminine and would result in physical punishment by spanking from the father. Kirk's sister, Maris, remembers that such spankings include a lot of belt incidents. Afterward, she said she would go to her brother's room and lay down and hug him, saying "We would just lay there and the thing that I remember is that he never even showed anger, he was just numb." The scientific rationale used to justify this horrific treatment of a 5-year-old child was that Lovaas and Reker believed that delivering an aversive stimulus to gay children would eventually change their behavior and thinking, and convert them.

In numerous publications over the next 30 years, Rekers cited the experience as a positive case study in reversing homosexuality, even though Kirk Murphy attempted suicide as early as age 17 because he, "Didn't want to grow up gay." In 2002, Murphy, a gay man, hanged himself. (If you're interested in learning more about the story, you can do a search on YouTube. Cooper Anderson did a three-part series on this specific experiment.) The lasting legacy of this ABA gay conversion treatment was, according to the Williams Institute UCLA School of law, a 2018 study yielded the following estimates: 698,000 LBGTQ adults ages 18-59 in the United States have received conversion therapy. Currently, 20 states plus the District of Columbia ban mental health professionals from providing conversion therapy to minors. However, 22 states continue to allow this practice.

The second of Lovaas' two conversion therapy programs at UCLA was an experiment on autistic children using positive reinforcers such as food, praise, attention, physical affection, including having the children kiss the experimenter upon request for desired or normal behaviors. He used violent aversive slaps, painful electric shocks, and yelled reprimands for autistic behaviors, such as flapping hands, rocking, banging body parts against objects, climbing on furniture, and non-compliance with coming to the experimenter on demand, or not hugging the experimenter on demand, or averting their eye gaze.

In a Life magazine article in 1965, Lovaas described autistic children as, "Underdeveloped, primitive, pathological, and subhuman." Nine years later Lovaas' words in an interview with Psychology Today confirmed his continued belief that autistic children are subhuman.

The majority of autistic people that are self-advocates and several disability self organizations as well believe the use of ABA on non-consenting humans to be a violation of their human rights. In 2022, ABA punishments still range from emotionally abusive tactics, such as planned ignoring and withholding affection even when the child is in great distress to withholding desired items or activities, gross personal agency and body autonomy violations, and even still today, painful electric shock and restraint. Painful aversives in the form of graduated electronic decelerators (GEDs) are still used at the Judge Rotenberg Center, even though the United Nations Special Rapporteur on Torture stated that the use of GEDs is a form of human torture and the American Food and Drug Administration attempted to ban it as well. But the Association for Behavior Analysis International still refuses to condemn the use, and every year the Judge Rotenberg Center is a presenter at the annual ABAI Conference.

However, just last week, due to advocacy activism, the US House of Representatives passed the Food and Drug Amendment Act of 2022, H.R.7667, which includes a provision that would ban the use of electric shock devices at the Judge Rotenberg Center.  Activists are now waiting for the United States Senate to include an amendment to ban the use of electric shock devices to treat self-injurious or aggressive behaviors in their version of the bill.

Previous autistic recipients of ABA have reported that the treatment caused them physical, emotional, and psychological harm and trauma, and groomed them for a lifetime of manipulation, exploitation, and abuse from others because they were systematically trained to comply with denial of self to please the person in power. Autistic recipients of ABA have reported PTSD, long-lasting trauma, chronic anxiety, depression, loss of identity and self-esteem, and suicidal ideation.

Previous recipients report being easily manipulated as teens and adults because they learn to be compliant to others' demands in deference to their own physical and emotional needs. Many autistic people who are in ABA or IBI as children, including some of my own activist friends, are still grieving their lost childhood spent in conversion therapy.

LGBTQ activists and their allies have successfully banned conversion therapy in several countries due to human rights abuses, and they continue their activism in others. Autistic advocates and allies are following suit in several countries, actively working to have their governments consider legislation to ban autism conversion therapy too. So, consider what therapy or treatment previous recipients consistently report violations of personal agency, body autonomy, and trauma outcomes. A large and growing number of ABA recipients continue to voice their grave concerns with the use of ABA on non-consenting human beings. Providers who demonstrate a complete disregard for the fundamental rights and freedoms of disabled people are squarely on the wrong side of this human rights campaign.

Dehumanizing Autism Myths

The myths that researcher Simon Baron-Cohen and others have perpetuated that autistic people are lacking in theory of mind and empathy play right into the dehumanizing autism narrative (2012). The myth about autistic people lacking theory of mind comes from a false belief test designed in the 1980s called the Sally-Anne test.  Clinical psychologist, Simon Baron-Cohen and his colleagues designed the test to assess a child's theory of mind. The small study included 20 autistic children and 27 neurotypical children, or as Baron-Cohen described neurotypical children, "normal" children. The study failed to replicate, but between 1988-1992, Baron-Cohen and his colleagues continued to claim that poor performance on theory of mind tasks uniquely characterized autistic people. 

More recently, Baron-Cohen has acknowledged that a lack of theory of mind, "may not be specific to autistic people." For nearly 30 years, other researchers have tried to correct this inaccurate claim, but the erroneous claim that only autistic people, "Together with robots and chimpanzees," lack a theory of mind, (Pinker 2002 and Mitchell 1997), and are, therefore, "biologically set apart from the rest of humanity in the lacking of the basic machinery," (Baron-Cohen, 2009). This echoes throughout psychology literature, therapy practices, and instructional settings - Gernsbacher 2007, Yergeau 2013, Yergeau and Huebner 2017. The claim that autistic people lack theory of mind outright fails, yet continues to pervade both in psychology and into our therapy practices.

You may be asking yourself, "What are the priorities of SLPs who are aligned with the neurodiversity movement then?" Half your job is training families and the immediate people around your autistic clients in acceptance. This can immediately impact their quality of life, not just for the client or the student, but for their family too because it reduces the stigma associated with their autistic neurodivergent differences. And research continues to emerge that says training autism acceptance works. 

Neurodiversity Implications for Intervention - Goals

Examples of goals that would focus on neuro-normalization would be neuro-normative conversation goals like turn-taking, back and forth, and asking social questions about things you have no interest in because this is not how autistic people socially communicate. Goals would focus on limiting stim behavior or monotropism (a topic that I address in my follow-up course), topic maintenance of communication partners, choosing for so many turn takes, imitating neuro-majority body language, facial expressions through masking, active listening, whole body listening, reciprocal and interactive play skills with peers based on neuro-normative play skills rather than true autistic play. Free time, recreational time, and even solo free time that is used to practice neurotypical play skills and social skills are all goals that focus on normalization. Tolerating sensory overwhelm and tolerating unwanted touch, which can be as simple as demanding high fives, shaking hands, hugs, kisses, or putting an arm around them are also part of neuro-normalization. 

Therapy goals and recommendations for neurodiversity-affirming practices include, instead of training your autistic students and clients to hide the autism, you would focus on increasing a client's communication abilities in the client's preferred method of communication, specifically helping them learn to communicate self-determination, self-advocacy, personal agency. Teach clients to establish and maintain their own personal boundaries against others and maintain the boundaries of others. Teach them safe versus unsafe. I am not referring to things like touching a stove. I am referring to social situations, such as how to determine and problem-solve in a safe versus unsafe situation, harmful people versus helpful people, and the difference between a friend, friendly, and non-friend. And this is a client-led goal that respects that the definition of friendship often looks very different to autistic people than to neurotypical people. 

The takeaway is that a neurodiversity-affirming therapist must be trauma-informed, respectful, and culturally competent. Remember, autistic culture is a culture. An allied provider's primary goal is to train autism acceptance to professional peers, families, and the community while ensuring their clients have body autonomy, receive informed consent, and express self-determination. Allied providers readily recommend and implement accommodations, supports, and modifications. They don't fade these things when they're working, which I always see in IEP goals. Something's working and the service provider wants to take it away to increase independence.  Neurodiversity-affirming services focus on making autistic people's lives better rather than reducing their autistic symptoms to make the people around them feel more comfortable.

Resources

These are free resources that you can download and print from: https://therapistndc.org/education/.  There are a lot of handbooks, a link to a free open-access book about neurodiversity, neurodiversity videos, and other helpful websites. 

Questions and Answers

In regards to neurodivergent-affirming practices, what are additional neurodivergent-affirming practices aside from eliminating goals that mask or reduce autism?

It's basically trauma-informed. Anything that's going to cause someone trauma or make them be something they're not, that shouldn't be a goal. I get asked this question all the time, "Well, you always tell us what not to do, what do you do?" I do the same therapy I would do for any of my other students or clients - articulation, voice (unless it's modulating voice that's a non-medical need), language and problem-solving using language, especially in middle school and high school. With my divergent and autistic students, that is the primary thing I work on because most of them have receptive and expressive language tested within average range, but they don't understand how to apply language skills and solve problems in social situations.  It's very telling when you present these problems to them and they can't figure out how to navigate. That, to me, is a better thing to learn, especially in transition after high school and beyond, to be able to problem solve for yourself and self-advocate in a situation.

What does autistic play look like? Or where can I find information on this topic? I'd love to learn more.

There are links to articles on the website about this. Autistic play is very individual to the autistic person. Play is described as something that brings us joy, right? An autistic child who is lining up cars in a row, you might not see that as a typical play skill. You might think you need to transition that to making them put cars over roads or whatever. But to that autistic child, that's meaningful to them. Another example is banging something. You may think they're just banging, but actually they're getting some kind of knowledge or joy out of that situation. So, what we should do in those situations is follow the child's lead for play, work on increasing language, and modeling language as you're doing what the child enjoys.

I've heard that playing in a typical way is important for developing age-appropriate cognitive skills. How would you address this from an affirming perspective?

There's research that came out in the last three years that shows that developing typical play skills and typical social communication didn't affect outcomes for autistic adults at all, it made no difference. Autistic people grow up to be autistic adults, right? Just because they didn't play the way you think they should have played doesn't mean that they didn't get some kind of knowledge out of that experience, or they didn't experience joy, or they didn't meet their own needs. For example, my students tell me all the time, "My teachers won't allow me to just have downtime at recess and do what I want. They're always making me join in games and things like that."   Think about this, when a student is holding it together in the classroom, trying to stay self-regulated and they get a break where they can just sit back, relax, be by themselves, block out some of the sensory overwhelm and we force them to continue to do that, that's when we see behavior problems, and meltdowns, etc. because we're not allowing them the opportunity to self-regulate on their own.

How do you train peers and families in acceptance? Are there books and videos?

There's a blog I wrote that's on the website where I describe the first time that I did this, and it was with an autistic student that was identified in kindergarten. I was just learning about training acceptance, and I had heard the mom cried the day before when the SLP had given the parent the diagnosis. I did not want this mom to change the way she viewed her son because before our multidisciplinary assessment, the mom was telling us how great this child was, how sweet, all of these things. Then, suddenly they're hearing all of this negative stuff about their kid.  I wanted this mom to realize this child is just as precious as they were before she received the diagnosis.  They had lots of good skills.

First, I talk to the parents and then I send them some of the handouts that are on the website. I will send them actual studies, especially the double empathy problem is an article that I stress a lot. I'll send them links to a certain amount of videos that introduce neurodiversity (those links are also on the website). And then I keep an open dialogue because I work in charter schools and have five campuses. I tend to follow my kids sometimes from kindergarten up through elementary or from middle school to high school. So, I keep an open dialogue with those parents.

In high school, we're talking about transition and how the student can self-advocate.  I will also advocate for the student when they start advocating for themselves and move away from parents a little bit regarding what the parent wants versus what the child wants. So, it's just a continual process, and there's a lot of research coming out. Desi Jones from UT Dallas came out with research last year and they did an experiment on video training men to have autism acceptance. Then, they did a study after that and showed that it works, that people's perception of autistic people change.

So. instead of forcing this autistic person to be someone they're not - and for me, I still live with chronic anxiety because I'm always worried about how I'm being perceived because I know that most people don't like the way autistic people communicate. It's not that we're deficient, it's just different. We just have differences. If we can accept that and move beyond "programming" our children to be neurotypical, to help them meet their needs and solve social problems using language where they can still self-advocate.

How do you navigate or discuss with school teachers or professionals that are not supportive of the neurodiversity movement? In particular, they may encourage or have an ABA therapist as a one-on-one aid at the school or clinic you work at. Is it ever appropriate to refuse to collaborate with an ABA team?

I don't collaborate with ABA teams and the school district I work with, they have accepted that. I don't sabotage them, but I do equally inform parents that, "Hey, there are other ways to give therapy to your child. Some of the things that they're working on are causing their behavior to increase because they're in trauma and they're acting out because they're in trauma." And we're also teaching them that their body autonomy, their personal agency is not theirs, that it belongs to the people in power over them. That's a very dangerous way to grow up and view the world, that your needs always come second. Your physical needs, your communication needs, all of that always comes second to the "gold standard" of neurotypical social behavior. 

Why is teaching whole-body listening not affirming or inclusive?

Autistic people and ADHD people say all the time that if you are taking all of your focus on keeping your hands still, keeping your body still, keeping your body forward, making eye contact, looking at the board, etc. then that's where all of your attention is going and you're not learning at the same time. When my assistants and I do therapy, kids can stand if they want to, they can move their body, they can stim. Even when we were doing therapy online, we let the kids pace, walk around, whatever they need, and these kids still made gains. In fact, I feel like we get better gains because the student is not so focused on regulating their body.

The teachers that I work with are very open to alternative seating, they let kids stand or have fidgets. I'm sure that during this course, I didn't have people's eyes on me all the time. I'm sure people were on their phones and checking messages, doodling, or whatever. It didn't impact the way that they were listening though. We talk on the phone all the time and don't make eye contact or keep our bodies still.  So, I think it's forcing one standard over an entire group of people that makes it traumatic for them. Why not just be accepting of different ways that people learn and listen? 

Citation

Roberts, J. (2022). The Neurodiversity Movement: An Overview for Autism Service Providers. SpeechPathology.com. Article 20554. Available at www.speechpathology.com

 

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julie roberts

Julie Roberts, MS, CCC-SLP

Julie Roberts, founder of Therapist Neurodiversity Collective, is a late-identified Autistic CCC-SLP who has been practicing for over 20 years. Julie has worked in both pediatric and adult settings, including public schools, as a private practice owner, a Multi-state Regional Clinical Director, and a National Field Director of Corporate Compliance for the nation’s largest provider of rehab post-acute care. Julie’s articles and educational resources have reached well over three-quarters of a million people.



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