An open letter to the board creating the special Autism certification for SLPs

According to a recent announcement made by ASHA, Speech-Language Pathologists (SLPs) will soon be able to become Board Certified Specialists in Autism Spectrum Disorders (BCS-ASD) if they “have completed training related to the implementation and supervision of evidence-based intervention programs in a variety of areas including social communication skills, speech, language, and behavioral programs.” The reason for this new credential is “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…you will join a network of outstanding professionals who share your interests and experience.”

Although specific information about this certification, or the process of creating it, has been alarmingly scarce, this secondary source mentions a few more details.

  • According to an unnamed board member, the certification process will involve “many components of applied behavior analysis SLPs should have.”
  • Lynn Koegel, the person who initiated this process and is listed as the primary contact for questions, is one of the founders of Pivotal Response Training (PRT – similar to ABA but applied even more systematically). She also founded the Koegel Autism Center.
  • In a presentation at the ASHA convention last year, it was revealed that BCS-ASD speech therapists may be able to oversee PRT.

The second point is easy to verify with a Google Search. So my first question is: are the first and third points true? If not, please feel free to disregard the concerns I have about them. Not to worry, I have several other points to raise here.

I have been a Speech Language-Pathologist (SLP) for six years. During that time, I’ve worked with autistic people of all ages in almost every setting. I’ve done everything from AAC to articulation to conversational skills. I’ve given inservices, advised family members, and recommended environmental modifications. I’ve been bitten, punched, and pulled out of my seat by my hair. I’ve had long and fascinating conversations about religion, ecology, and our solar system. (That last one, by the way, was with a four-year-old.) I’ve had my worldview challenged multiple times and in many ways, and I am a better person and therapist for it.

I have learned a ton about life, the universe, and myself from autistic people. I don’t say that to be cliche; it is literally true. Not too long ago, I myself was diagnosed with autism.

I’m telling you all this because I need you to understand how familiar I am with the scope and variety of strengths and needs in the autistic population. I have a number of concerns with your BCS-ASD program, and these concerns are coming from a place of knowledge and expertise, both personal and professional.

1. The description of this certification does not mention Augmentative and Alternative Communication (AAC) or Auditory Processing.

Your description refers to three different aspects of communication (social, speech, and language) but omits two that are particularly significant to the autistic population. First, you make no reference to AAC even in general terms, even though a substantial portion of the autistic population uses AAC to communicate. Second, you fail to include auditory processing, which is another aspect of communication that presents a significant difficulty to many autistic people.

Your description of the BCS-ASD ignores two aspects of communication that are essential to significant portions of the autistic population. It is irresponsible to say that a therapist who specializes in communication has specific expertise with Autism Spectrum Disorder without first requiring the therapist to demonstrate knowledge and experience of issues that are vital to understanding the strengths and needs of autistic people.

2. The description mentions one skill that is tangential to the SLP scope of practice, but excludes others.

Nowhere in your description is there any mention of sensory processing. This would make sense, given that sensory processing falls outside the SLP scope of practice, except that you do mention a different field outside of our practice: behavior. Sensory needs and outward behaviors are both essential to understanding the strengths and needs of autistic people. So, it is perplexing that you have included one but not the other.

3. There is no reference to the involvement of autistic people in developing this certification.

Aside from the ambiguous meaning of the word “consumers,” you make no effort to describe how this certification benefits autistic people directly, or what (if any) role autistic people have played in developing the BCS-ASD program. There is no information on how many (if any) autistic people were included on the board. If you do not allow autistic people to participate or even consult, you cannot be sure you are meeting the needs of the autistic community. You are making decisions that affect autistic people without allowing them – us – to have a voice.

4. ABA was specifically mentioned as a requirement for receiving the BCS-ASD.

This is a big one, so bear with me.

Even the U.S. Education Department acknowledges that ABA is not the only treatment method for autistic people. It is extremely well-known, but it is not a requirement, especially for communication therapy. Six years of clinical experience has taught me that I do not have to use ABA in order for my autistic students or clients to make progress in their communication. Yet ABA is specifically mentioned as a requirement for SLPs who want to specialize in Autism.

ABA has a deeply problematic history. Ole Ivar Lovaas, the man who founded it, has gone on record saying horrifically dehumanizing things, including:

“You have a person in the physical sense — they have hair, a nose and a mouth — but (autistic people) are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

“believe me they are monsters, little monsters”

“I just reached over and cracked her one right on the rear. She was a big fat girl so I had an easy target. …And she stopped hitting herself for about 30 seconds…and then she hit herself once more…I felt guilty, but I felt great. Then she hit herself again and I really laid it on her. You see, by then I knew that she could inhibit it, and that she would inhibit it if she knew I would hit her. So I let her know that there was no question in my mind that I was going to kill her if she hit herself once more, and that was pretty much it. She hit herself a few times after that, but we had the problem licked.”

Interview in Psychology Today, 1974

With these quotes in mind, it is not surprising that preliminary evidence shows a significant portion of people who experience ABA show symptoms of post-traumatic stress later in life.

ABA has always been steeped in blatant ableism, and people who experienced abuse at the hands of ABA practitioners are still coping with trauma to this day.

Even clinical educators and researchers are finding that ABA is more abusive than beneficial and in fact this applies to compliance-based training in general.

But wait! You might say. ABA has changed! It’s better now! To that I respond: not exactly.

Here is a parent listing problems with “the new ABA.” Here is another one. Here is an autistic person analyzing videos of “modern ABA” practices. If you only have time to look at one of these three sources, I particularly recommend this last one.

You may not have time or energy to read any, so here are some of the common points:

  • ABA is, at its core, compliance training. It teaches children to do what they are told, when they are told, because they are told.
  • Compliance training teaches children that they are not allowed to say no to something that is unpleasant or uncomfortable to them. ABA with physical prompting teaches children that other people can touch and manipulate their body without their consent. This can leave them vulnerable to serious abuse in the long term.
  • ABA does not always consider the ways that behavior is communication. When it does, it often uses this knowledge to force or manipulate a child into doing what practitioners want them to do.
  • ABA practitioners ignore the way that children are feeling in the moment. This teaches children that their feelings are wrong or unimportant. The assumption that children need to “earn” things they need or want teaches the same thing.
  • Even “new” ABA uses aversives in the form of “planned ignoring,” meaning that if a therapist doesn’t like a child’s behavior, they simply ignore the child until it goes away. This practice teaches children that their voice is only worth using if they’re expressing something that adults around them want to hear
  • ABA takes away from the time that autistic children get to spend being children, enjoying themselves, and exploring the world on their terms.

Yes, there are individual ABA practitioners out there who choose to implement ABA in a way that does not do these things. Yes, there are ABA practices that can benefit children of all neurotypes in a way that is not harmful. For example, if a child communicates “silly putty” to me, and I immediately give them silly putty, I am using principles of ABA to reinforce successful communication. I understand this.

However, when a therapist or educator implements ABA without also valuing the child’s unique way of perceiving and interacting with the world, in the long-term they do more harm than good. I know, because I’ve seen it happen.

I have worked with many, many children and adults who have been taught through ABA or related practices that their feelings don’t matter, that the things they need or enjoy always need to be “earned” by doing what adults ask. Do you, the members of this board, understand how difficult it is to improve the communication of someone who has been trained not to trust themselves? I end up using a trauma-sensitive approach with students who have no source of trauma in their lives other than years of ABA. Do you realize how heartbreaking this is? Can you empathize, even for a moment, with the people you are trying to help?

Regardless of whether you are able to use perspective-taking skills on autistic people, there is empirical evidence that not all ABA targets or practices are effective. For example:

5. There appears to be a Conflict of Interest with the person in charge of the BCS-ASD program.

Although behavior is mentioned as an important component of working with autistic people, AAC, auditory processing, and sensory processing are all omitted. This pattern of omission, given that Lynn Koegel founded a form of behavior therapy, is concerning on its own. If the first and third bullets from above are true (the certification will require knowledge and/or experience with ABA; people with the BCS-ASD will potentially be supervising PRT practitioners), the Conflict of Interest becomes even more problematic. At best, the specific experiences of the person who initiated this program are causing an inadvertent exclusion of areas that are vital for understanding communication in autistic people. At worst, the founder of PRT is creating a specialty certification, under the guise of improving services for autistic people, that will channel more money into programs that she developed. Either way, there are deeply concerning ethical issues about this process which need to be addressed immediately.

The bottom line is this: in your BCS-ASD program, you adhere to a specific perspective of autism that sees ASD as a behavioral disorder to be treated using reward-and-punishment compliance training. In doing this, you fail to include multiple traits of autistic people that are directly relevant to SLPs, even though you do mention behavior, which is not. You give no consideration to SLPs who have a different perspective of autism. According to this description, any SLP who has ethical problems with ABA will not qualify for this certification, no matter how much experience they have had with the autistic community. You anticipate that certified therapists will be able to supervise PRT providers, without acknowledging the Conflict of Interest this presents, given that the person who initiated the process is the very person who founded PRT in the first place. Worst of all, you fail to mention whether autistic people had any role in establishing this certification program.

When I first heard that a program was being developed for SLPs to obtain a specialty certification in autism, I laughed. I really did. My initial thought was that I already have certification in SLP and ASD, so I guess I’m all set! Obviously that’s not what you have in mind. Indeed, a large portion of the SLP professional culture doesn’t believe it’s possible for autistic therapists to exist.

But this isn’t about me.

This is about the autistic people I work with being, once again, defined in a very specific way that ignores significant needs and accommodations while pushing treatments that have the potential for harm. At best, this program is ableist and exclusionary. At worst, it’s ableist, exclusionary, and corrupt.

It’s not just that your perspective is different from mine. It’s that the possibility for variations in perspective are ignored, that preference is shown for the perspective that stands to financially benefit the people coordinating this process, despite the potentially harmful impacts on the people we are claiming to serve.

I am an autistic speech therapist, and I love working with my autistic students. I love helping them communicate, and I love helping the people around them appreciate them for who they are. This is something I have devoted a significant amount of my time and energy to for several years, and I hope to continue in this capacity for many years more. Autism helps me in this regard because it gives me the intense passion and hyper-focus that allows me to put everything I have into helping people in the autistic community find their voice and use it as effectively as they can. I would hope that at least one person on the board can understand this.

I am asking you to reconsider the criteria for this certification. I am asking you to either mention sensory differences AND behavior, or mention neither at all. I’m asking you to include AAC and auditory processing under necessary areas of expertise. I’m asking for acknowledgement that autism is – in addition to being a neurological disability – a difference in perception and communication that is exacerbated by stigma and lack of understanding from non-autistic people. I’m asking you not to require SLPs who work with autistic people to endorse ABA.

Most importantly, I’m asking you to consider the wants, needs, and preferences of autistic people when you create programs that affect them as directly as this one does. I’m not asking to be personally included; I am, after all, an anonymous blogger and I intend to stay that way. I am asking for someone – even one person (though preferably more) – on the autism spectrum to give input into this program, and for their perspective to be valued and considered very carefully. You claim you want to help autistic people. So do that.

How to teach pragmatic language without being ableist

Here’s a thing I maybe shouldn’t admit: I hate doing Pragmatic Language Therapy.

For those of you don’t know, “Pragmatic Language” refers to the use of verbal and nonverbal language in social situations. PLT, which closely overlaps with the terms “Social Communication” and “Social Skills,” is one of many areas that Speech-Language Pathologists (SLPs) can target. It includes a wide range of skills, such as:

  • The use of pitch and tone (example: “She has a cat.” vs. “She has a cat?”)
  • Perspective-taking (“How does that person feel and why?”)
  • Using language for a variety of purposes (commenting, requesting, rejecting, etc)
  • Clarifying miscommunication (saying something in a different way, saying “I don’t understand”)
  • Following conversational rules (taking turns speaking, staying on topic) and rituals (greetings, farewells, etc)
  • Starting and ending conversations or topics

Part of my dislike of PLT is the fear that I’ll have to teach a skill I barely know how to use in my own life. I have never been particularly socially adept, and there will always be aspects of the Neurotypical (NT) social sphere that elude me. So who am I to evaluate and teach these skills in other people?

That said, many of my feelings on the subject stem from my oft-repeated opinion that Speech-Language Pathology is an unapologetically ableist field. With PLT in particular, many of us are encouraging ableism in the people we serve and the other people around them.

It is possible to conduct PLT in a way that is inclusive and empowering instead of ableist. Some folks do benefit from direct instruction in Pragmatic Language, as long as therapists and educators are careful to avoid the pitfalls of ableism and other forms of bigotry.

Here are a few reasons why I dislike PLT, followed by some questions for educators and clinicians to ask themselves when teaching social communication in any of its forms.

Reason #1: “Pragmatic Language” is an arbitrary category.

Someone on a forum for SLPs asked about the difference between “Social Communication” and “Pragmatic Language.” Almost every single person (myself included) replied with different ideas. This field is so subjective and ill-defined that we don’t even have agreed-upon definitions for the most general terms!

Beyond that, folks in and around SLP culture tend to use these terms to refer to behaviors that have little if anything to do with communication or language. A certain big name manufacturer of speech therapy materials seems to define “social skills” as everything from manners to eye-contact to school rules. I’m not sure in which universe “walk quietly in a single-file line” counts as communication, but it’s not the one I live in.

This blurring of the boundary between “pragmatic language” and “school behavior” means I get a lot of requests for Pragmatic Language evaluations of students who have emotional, mental health, or conduct/defiance disorders. Yes, it’s important to find out whether these students have communication difficulties underlying or exacerbating their struggles, but it’s neither fair nor productive to assume they do by default. If you tell a student “sit in the blue chair,” and they look you in the eye and deliberately sit in a red chair, that isn’t necessarily a communication breakdown. There is a strong possibility that that student is communicating something to you exactly as they intended. You don’t get to assume they have an impairment simply because they are communicating something you don’t want to hear in a way you don’t want them to communicate it.

Including challenging behaviors under “pragmatic language” comes from and contributes to an presumption that behavior and social skills are inextricably linked. This is sometimes true. The assumption that it is always true is, among other things, ableist. Which brings me to my next point:

Reason #2: Many judgements about social skills stem from ignorance and/or indifference to diverse perspectives.

Oh look, I’m complaining about ignorance and bigotry in my profession! It must be a weekday. Or a weekend. One of the two. Anyway…

In the United States, SLPs are required to show Cultural Competence in all aspects of our profession. As noted by the American Speech and Hearing Association, this can include: “age, disability, ethnicity, gender identity (encompasses gender expression), national origin (encompasses related aspects e.g., ancestry, culture, language, dialect, citizenship, and immigration status), race, religion, sex, sexual orientation, and veteran status.” Cultural Competence requires us to consider a person’s unique set of identities when we evaluate, write goals, and conduct therapy.

One of the reasons PLT stresses me out is that the “rules” of verbal and nonverbal social language differ drastically between all of the aforementioned groups, but NT people – especially white western folks – tend to view their way as The One Correct Way. Any deviation is flagged as something wrong that should be fixed. Cultural Competence requires a deliberate effort to consider individual differences. It means identifying our biases and deliberately working to overcome them.

Cultural differences affect language and communication in a variety of ways, but Pragmatic Language is possibly the most obvious one. Examples include physical proximity and boundaries, conversational turn-taking, direct vs indirect communication, conflict resolution, and social rituals. Body language that may come across as friendly to one person may feel aggressive to another; the opposite behavior may feel rude to the former person but welcoming to the latter. Cultural competence means acknowledging that neither perspective is is The Correct One.

To be fair, many Pragmatic Language assessments do specify that clinicians need to consider a person’s culture when evaluating them. The issue of Cultural Competence is more widely acknowledged than some of the other problems with PLT. That said, the overwhelming majority of SLPs in America are white, a demographic which is only recently starting to move away from seeing ourselves as the “default.”

Over and over I have witnessed SLPs making racist remarks – in seminars, at work, or on social media – about a person’s appearance, behavior, dialect, vernacular, or accent. Some SLPs have argued vehemently, even violently, about gender-neutral pronouns, queerness, or gender roles. These biases influence evaluation and treatment of language, and many of them impact PLT in particular. How can we truly be Culturally Competent when so many biases keep getting in our way?

In one of the more widely-known Pragmatic Language rating scales for kids and teenagers (the Pragmatics Profile of the CELF-5), one item asks how a student responds to “teasing, anger, failure, or disappointment.” Students receive the highest possible rating when they always (or almost always) respond using “culturally appropriate” language. There is no mechanic to consider students who mask their emotions due to anxiety, depression, or something else. In a different assessment (the SLDT), students receive the highest possible score for some items if they state that they would lie to peers in certain situations. These lies are rated higher than truthful responses showing empathy or sympathy. In a Social Skills checklist for Preschool-age children, students who spend almost all of their time playing with peers are given higher scores than children who play on their own at least some of the time. Students receive higher scores simply for being extraverted. In these cases, it is up to the clinician to consider individual differences.

Unsurprisingly, neurotype is not one of the factors listed under Cultural Competence, even though even some SLPs are starting to acknowledge that autism is an identity worth respecting. Excluding neurodiversity is especially problematic because a huge portion of the people who receive speech therapy, especially PLT, are autistic. Yet instead of recognizing autism as a different way of perceiving and interacting with the world, many practitioners of PLT train autistic folks to act neurotypical (also known as “masking” or “camouflaging”), even when their reasoning directly contradicts research.

Take, for example, the study that used MRI scans to demonstrate the negative effects of eye-contact on autistic people, or the study showing that interaction between autistic people is just as effective and meaningful as interaction between non-autistic people. Consider the research that shows masking/camouflaging to be one of the highest risk factors of suicide in autistic people. The fact that these articles haven’t made waves in the field of PLT indicates how little respect our field has for neurodiverse (ND) identities. Instead, clinicians and educators trick, bribe, prompt, or force autistic people to make eye-contact against their will. They continue to push the narrative that autistic people are inherently poor communicators who require extensive therapy in order to have successful relationships. By ignoring the perspectives, strengths, norms, or needs of autistic people, this narrative would blatantly violate the rule of Cultural Competence, except that ASHA has yet to include ND folks in its definition. As a profession, we do not seem to care.

Reason #3: PLT can be abusive and damaging.

Recently, The Guardian published an article about a school that forced a 10-year-old special education student to draw a picture of himself surrounded by a list of his personal faults. This “project” was their response to the student’s complaint that other students were bullying him. How did he come up with all his flaws, you ask? Simple: he was forced to sit down and listen as his peers, under the direction of the educators, told him all the reasons they didn’t like him.

There are so many problems with this: victim-blaming, humiliation, ableism, and abuse, for starters. Unfortunately, this incident is the product of a system that consistently others and humiliates people who are different, placing them at fault for any bullying that they face. For example, this research review on autism and bullying lists a series of social deficits that make autistic people prime targets for bullying, without placing any responsibility on the people who bully them. A more recent example is the range of reactions to the aforementioned incident from SLPs and other clinicians and educators on social media. Some people expressed discomfort or distress, but more people described similar practices that they use during PLT.

Although usually more underhanded and implicit, PLT has the potential to hurt students in the same way that this school did. Without careful consideration, it’s easy to accidentally teach a student self-hatred, internalized ableism, and victim-blaming. PLT can train people to think “I’m bad and it’s my fault that people bully me” or “I need to change who I am if I want to have friends,” even if we’re not making them write or say these things directly.

As mentioned before, PLT with autistic people teaches masking, which means adopting behaviors that mimic NT people. Far too few NT clinicians understand (or care?) how much emotional labor this takes (here is a long but amazing article on emotional labor and autism) or how false and draining it feels.

I’m going to give a personal example. My social experience as a preteen and early teenager was not, shall we say, great. (I’m going to skip the details, but you can probably infer them based on what frequently happens to ND students at school.) I lacked awareness of social nuances. I rarely if ever thought through what I was saying, how I was saying it, or how I might make people feel. This is not to say that I didn’t care how other people felt, just that some things that are obvious to NT people simply didn’t occur to me. To make matters worse, I was not diagnosed with Autism or ADHD until adulthood, so people were responding to me as if I was a NT child whose difficulties were due to personal faults.

And then I learned how to mask.

Like a lot of autistic people, I needed to be confronted with social expectations in blunt, concrete ways. Like a lot of autistic people (especially girls, though boys do this too) I learned the rules through imitation. I mimicked my peers, even when I didn’t like or understand their behavior, in a desperate attempt to be liked. It worked, in a sense. After years of trial-and-error, I created a mask that allowed me to blend in, which noticeably improved my social experiences. When I successfully pretended to be a NT person, I fit in…right up until I burned out.

Masking is exhausting. As an introvert, I already find social interaction draining, but doing it while pretending to be someone I’m not is even worse. Because that’s what masking feels like: pretending. When I mask, I’m playacting. I’m deceiving people. I’m adopting mannerisms – good and bad – that I see NT people use, because after a couple decades of practice, I’ve learned that This Thing works in This Context. Constantly maintaining that facade is exhausting.

What’s worse, because of the way my social experience improved as I got better at masking, I learned that I was only allowed to have friendships if I successfully fooled people into thinking I was someone I’m not. Even before I learned I was multiply-neurodivergent, I was hyper-aware that I was fundamentally different from everyone around me, and not in a good way. Years of teaching myself to mask may have improved my life on the surface, but with those improvements came an Anxiety Disorder (even now there are social nuances I don’t understand, which creates a deep-seated fear that I will mess up and ruin everything without knowing why), suicide attempt (just like the research indicates!), and the belief that my value as a person is entirely dependent on my ability to act like someone else.

This is just my experience as a white ND person. For ND people of color, the experience is even harder. With the extra scrutiny and discrimination against people of color by police, CVE programs, and white civilians, masking for autistic people of color is an actual matter of life and death.

If the link between suicide and masking was surprising before, hopefully it makes sense now.

When we conduct Pragmatic Language Therapy with autistic people, we are teaching them to mask. I cannot stress this enough. We are literally teaching autistic folks to act like someone they’re not, with the promise that their quality of life will improve as a direct result. The sad part is: it’s true. For many autistic folks, positive relationships with NT people, such as friendship, romance, employment, tolerance, and (for some) not being killed, directly correlate with their ability to successfully mask their autism.

This is due to a wider systemic and social problem that individual therapists can’t fix. But PLT, unless it’s conducted in a deliberate and mindful way, reinforces the idea that value and worth is inextricably linked to the ability to pass as NT.

Reason #4: Often, we aren’t teaching what we think we’re teaching.

Too often, social skills or other lessons with Special Education students teach universal compliance rather than skills promoting independence and dignity. We are constantly telling the people we work with that they don’t have the right to say “no.” In addition to the overuse of physical prompting, I’ve witnessed educators and clinicians saying things like: “You do not say no to other kids,” or “Never say no to an adult.” For people who think literally, imagine the sorts of problems this message can cause in the future. If you work with autistic or intellectually disabled people, step back and consider the scope and variety of abuse that you are potentially enabling when you teach a person to “never say no.”

This is an extreme example. There are also less extreme ones.

For one, there’s a certain fictional student designed to teach children how to listen with their “whole body.” Listening, he asserts, is not just about hearing what a person says; it’s also about looking at that person’s eyes and keeping your body completely still. This character teaches students how to show adults that they are listening, but does not acknowledge that for some people, Whole Body Listening is counterproductive.

With my double diagnosis of Autism and ADHD, I can tell you with great certainty that when I focus on looking at a person’s eyes and suppressing my tendency to fidget or stim, it is very difficult for me to process what they’re saying. Many, many, many,* many, MANY other ND folks report the same thing.

*For discussion of listening and looking, skip to ahead to 2:13. Honestly though, the entire video is worth a watch.

For ND people, I compare Whole Body Listening to rubbing your stomach while patting your head, or doing a crossword puzzle with the TV on. With time and practice, some of us can learn to those things simultaneously, but it will always take extra effort. For others, it simply cannot be done. Yet PLT tells ND people that our style of listening is “wrong,” that the “right” way to listen is to make things difficult, even impossible, for ourselves in order to help the speaker feel comfortable.

Another example of counterproductive PLT is “Size of the Problem.”If you follow me on Twitter, you may have seen my rant on this topic about six months ago. Here’s a condensed version:

My watch broke one morning at work, on a day when my schedule was particularly full. As a result, I shut down. You know what absolutely did not help me? Thinking about the “Size of the Problem.” I knew perfectly well that not having a watch didn’t make my day impossible. There are clocks on the walls of literally every classroom, including my own. That knowledge didn’t stop me from feeling, in the moment, like my day was imploding around me. I’ve had students and clients experience grand mal seizures during therapy sessions, and I responded to them exactly as I was trained. But when my watch broke, so did I.

Size of the Problem doesn’t work if it refuses to acknowledge when a person is genuinely upset. SotP doesn’t work if it treats people like they can’t recognize the difference between an emergency and an inconvenience, simply because their reactions are not what NTs expect. Very few people, NT or ND, feel comforted when someone tells them, “It’s not a big deal” or “You have nothing to be upset about.” SoTP is pretty much that, only as a structured lesson plan.

Implemented carelessly, SotP teaches a person to hide what they’re feeling because their emotions are wrong and should not be acknowledged. It teaches people that their internal reactions cannot be trusted. It teaches people to say “it’s not a big deal; I have nothing to be upset about” to themselves.

All this to say, if PLT doesn’t take each person’s perspective into account (which, funny enough, is one of the things PLT teaches people to do) it can teach something very different from its intention. It teaches people to comply with everything regardless of personal discomfort; it teaches people to make situations more difficult for themselves because their communication partners’ comfort is more important than their own.

So how do we conduct PLT without damaging the people we’re trying to help? Here are some questions to ask yourself when you are planning or implementing PLT.

Question #1: Am I making space for people who perceive the world differently than I do?

A lot of these questions focus on making therapy person-centered. This is a concept that many of us have probably discussed in Grad School and/or Continuing Education. Person-Centered (which is different from Person First, a concept that can be insulting to disabled people) therapy asks us to consider a person’s unique set of traits and perspectives. Their individual wants and needs should inform every step of evaluation and therapy. When you design and conduct PLT, are you considering the viewpoint of a person whose perspective is different from yours?

Let’s start with Size of the Problem. For all its faults, SoTP can equip a person to step back and think through problems. SoTP can help people who have trouble recognizing the difference between an emergency and a fixable inconvenience, as long as the criteria for this difference does not include: “How you should react.” For therapists, this means acknowledging that a person’s emotional size of the problem may differ from 1) the therapists’ emotional size of the problem and 2) the practical size of the problem. It means recognizing that these differences exist and should be acknowledged, not punished.

Instead of asking “How should I feel about this?” SoTP should ask questions like: “Do I need to find help?” “Should someone call 911?” or “When I feel calm, can I solve this on my own?” SoTP can acknowledge the difference between “big problems” and “small problems” by focusing on practical effects and steps to finding solutions, including strategies and materials, how quickly a problem should be addressed, or the level of help that is needed.

Although the next step crosses the (albeit arbitrary) line from social communication into emotional regulation (which PLT often does even though it seems out of our wheelhouse), SoTP can equip a person to acknowledge feelings of frustration and anger without feeling penalized or shamed. It can teach people to ask: “What do I need to do when I’m upset?” It can teach people to use strategies to calm down and deal with the situation.

This question also ties in to the rule of Cultural Competence. To be culturally competent, the SLP needs to acknowledge their own cultural background and how it influences their perception of other people. We need to recognize that our own identities are complex and dynamic while learning as much as we can about the people we work with. We need to understand differences in values, ideals, and habits without passing judgment. This means admitting that value judgment is an instinctive, implicit process influenced by unconscious personal biases, and that counteracting it involves self-examination and honesty, even when the results are uncomfortable to acknowledge.

With autistic people specifically, clinicians need to consider The Double Empathy problem, which posits that social breakdowns between autistics and non-autistics “are not due to autistic cognition alone, but a breakdown in reciprocity and mutual understanding that can happen between people with very differing ways of experiencing the world.” I already linked to the recent study corroborating this theory, but I’m including again because it’s just that important.

To be truly Culturally Competent, non-autistic clinicians who work with autistic people need to start acknowledging autism as a difference in perceiving the world, rather than a disorder that needs to be fixed. We need to understand that PLT from a NT perspective is teaching autistic people how to mask.

Unfortunately there are situations where masking autism is important or even necessary (see Question #2), and PLT can effectively teach some of these skills. The important thing here is to explicitly acknowledge that you are teaching an autistic person how to mask because the NT world is not always ready to accept them as they are. This places control in the hands of the person you are working with, while helping them separate their intrinsic personal value from their ability to “fit in.” Even in these cases, there are autistic people who will reject masking or PLT in any form. Cultural competence means accepting that this decision is valid even when you believe it will create long-term disadvantages.

Question #2: Are Pragmatic Language difficulties causing distress for the person I’m working with?

This is a subjective guideline, to be sure, but it’s an important one. As I mentioned above, many of the skills we target in PLT focus on making a person appear “normal” or making communication partners feel comfortable. However, there are some social skills that impact a person’s well-being in a much more practical way. Examples include:

  • Wanting to interact with peers but not knowing how
  • Frequent and frustrating breakdowns in communication
  • Difficulty clarifying miscommunication or misunderstanding
  • Limited functions of communication (example: the person can use language to share information but not request something they want or need)
  • Difficulty with non-literal language

There are other examples, I’m sure. The trick is to carefully and critically examine the direct, concrete impact that Pragmatic Language difficulty has on a person’s life. Does a student play alone because they prefer it, or do they show signs of wanting to play with peers but being unable or unsure? Do both of these interpretations apply at different times? Does a patient struggle to express themselves clearly even though their language skills are intact? Does a client only make requests because they don’t know how to use language socially, or do they simply prefer interaction to be non-verbal? Can the person I’m evaluating advocate for themselves?

All of these issues need to be examined with regards to Cultural Competence. Does the person you’re working with have similar difficulties when interacting with their family? Religious community? Friends from the same cultural background? Do your research; does a pattern you’ve observed match a social norm from one or more of the person’s identities? If so, this is a difference to be acknowledged, not an impairment to be treated. Educating communication partners may be in order, but teaching the person to pretend to be from a different culture is not.

Also, we need to be very, very, very careful to avoid answering this question with something like, “This person is being bullied” or “This person doesn’t have friends.” In these cases, the person we’re working with is not the root cause of difficulties with social communication; the people around them are. It is not that person’s fault that other people are choosing to bully or exclude them. If you believe that bullying is the person’s fault or responsibility, take a step back. That is victim-blaming, and it is toxic and damaging. This assumption can and will find its way into your therapy, even if you don’t explicitly put it there.

Question #3: Is the communication breakdown affecting the well-being of the communication partners?

This is another tricky one. I’ve mentioned above that a lot of practices under PLT target skills to make communication partners feel comfortable, by teaching people to adopt behaviors and habits that are uncomfortable or counterproductive. It is very easy to answer this question by doing that, such as saying “Yes, this person’s lack of eye-contact makes people assume they aren’t paying attention.” I cannot stress enough that this is not culturally competent or respectful of individual differences. This teaches people how to prioritize other people’s needs over their own, and it’s exactly why I dislike PLT so much.

To teach PLT in an inclusive way, it’s important to look the specific ways that a person’s communication style affects the people around them. Is there discomfort due to differences in culture or identity, or is genuine, unintentional harm taking place? Do a person’s words, tone, body language, etc. make communication partners feel insulted or threatened? Are communication partners unable to express their wants or needs? How do established power dynamics (e.g. gender, body type, race) influence the answers to these questions?

These questions in particular are complicated because we may find ourselves in the position of weighing one person’s perspective against another’s. It is not fair to ask someone to consistently prioritize other people. At the same time, choosing not to qualify a person for PLT could prioritize their perspective over everyone they come into contact with, by saying “this is how this person acts and everyone else needs to deal with it.” How do we respect the person we’re evaluating without doing that?

In some cases, the answer to this question might be to educate communication partners. This includes making people aware of cultural differences, or spreading information about neurodiversity in a way that promotes acceptance and understanding. In the case of genuine pathology, such as difficulty with social cognition due to brain injury or dementia, therapists may give communication partners recommendations for how to interact with the person.

In other cases, direct PLT may be needed to help a person understand the unintentional effect they have on the people around them. Perspective-taking is a particularly good example of this, because it teaches a person how to consider the thoughts and feelings of other people without making value judgments. Again, this puts the power in the hands of the person you are working with. Saying “speaking loudly can make people think I’m angry,” or “people feel frustrated if I don’t give them a turn to speak,” can give a person tools for improved interaction without making them feel like they need to behave in a particular way.

Teaching Active Listening can accomplish something similar, as long as you’re careful to avoid strategies that are counterproductive for the listener. For verbal autistic folks or people with ADHD, Active Listening might include repeating a person’s message or saying “it sounds like you feel __” rather than focusing on body posture or gaze. Again, it’s important to teach these skills as strategies to use in certain situations, rather than behaviors that influence a person’s value or worth.

Question #4: Is personal empowerment built into the therapy program?

Self-advocacy, on the opposite end of the Pragmatic Language continuum, is an important and powerful skill that every person deserves to have in their repertoire. For some people, this means learning to communicate with a variety of purposes such as requesting, rejecting, protesting, expressing preferences and non-preferences, and informing people that something is wrong. For others, this means understanding that their self-worth is not connected to their ability to successfully complete a social skills program. Far too few PLT programs think to include these skills, and the effect on the people we serve can be deeply damaging.

Here are some things that many people who have social and/or cognitive difficulties don’t hear often enough:

  • You are a good person.
  • You have value.
  • The things you are good at matter.
  • Respect, consent, and boundaries work both ways.
  • You have the right to make choices.
  • You have the right to say no to things you don’t like.
  • Your body is your own.

For some people, teaching empowerment means saying these things over and over. A program called the Whole Child approach incorporates these concepts into everything they teach. You are a valuable person, and you can learn and grow and you will still be a valuable person. You can struggle with some things your entire life, and you will still be a valuable person.

For others, it means acknowledging that difference is not wrong. For example, some children are introverted, and that’s fine. Some children want to play with peers but don’t know how. Others alternate between group and solo play depending on mood, energy level, time, or environment. You can teach a child how to play with peers while reminding them that “sometimes kids want to play by themselves, and that’s okay too.”

For other folks, empowerment means making a distinction between social interaction and inherent worth. Take, for example, people who can talk for a long time about specific topics. Although fellow ND people understand and appreciate this skill, NT people often find it bothersome. Teaching empowerment means that while you encourage a ND person to let other people choose the topic sometimes, you also acknowledge that their own passions matter. ND people have important and interesting things to say and they deserve to talk about their interests as much as NT people deserve to talk about theirs.

Unfortunately, the larger world doesn’t often see it that way. Awareness and respect for differences due to race, ethnicity, neurotype, and other cultural identities simply do not exist in a lot of spaces. It’s even worse for people of color, who face additional risks in a world that is constantly viewing them through suspicion, fear, and outright hate. For people with multiple marginalizing identities, empowerment can be dangerous. This is an awful truth that is beyond our scope. All we can do is educate people in the spaces we inhabit and acknowledge that the world is still a very bigoted place.

In the meantime, what do we do? What is our role for marginalized people with pragmatic language difficulties? How do we teach empowerment when self-advocacy for some can result in incarceration, deportation, or death?

I don’t have the answers to these questions. I wish I did, but I don’t. That doesn’t mean they aren’t worth asking; just the opposite in fact. Being inclusive, person-centered, and culturally competent requires us to ask these questions constantly. We can listen, we can learn, we can educate ourselves and the people around us, and we can examine our own biases at every opportunity, in order to help the people we serve in an effective, inclusive, and meaningful way.

Dear Non-Autistics: We need to talk

Once again it’s April, the month when stigma and stereotypes about autism reach peak saturation. I’m going to be completely honest with you: this time around, I’m really tired. I’m tired and I’m angry and I’m sad.

I’m not going to hash out, again, why “Autism Awareness” is so demeaning to autistic people, or why “Autism Acceptance” is such an important alternative. That’s been done already. Go ahead and google those terms if you need to. Or read what I wrote last year.

Then come back, because we need to talk about the way non-autistic people treat autistic people, in April as well as year-round. We need to talk about how, with everything that non-autistics assume about autistic folks, they seem to be missing a few key points about themselves.

(I recognize that not all non-autistic people say or do the things I’m going to talk about here.  If you, a non-autistic person, read any of the following and think: “I don’t do that!” then let me take this opportunity to say thanks and ask you to consider what you are doing to call out this behavior in your fellow non-autistics.  Do you already do that? Great. Again, thanks for showing basic human decency. Now, lets work together to bring more non-autistics into your camp.)

So. 

Hi. 

In the post that I linked above, I described a study in which people were asked to rate autistic and non-autistic people, presented in videos, photographs, or text-only transcriptions, against traits including “awkward” or “approachable” and intents to interact, such as “I would want to be friends with this person.”  Participants rated autistic people less favorably (i.e. more awkward, less approachable, less desirable to be friends with) than they rated non-autistics after viewing short videos, long videos, or photographs.  There was no difference between ratings when people read transcriptions only.  From this, researchers speculated that stigma against autistic people isn’t entirely our fault, that personal biases may also play a role.

In a follow-up study, researchers replicated their results with the additional findings that 1) people tend to rate an autistic person more favorably if they know the person is autistic and 2) ratings are influenced by previous knowledge of autism.

In the most recent follow-up study, researchers demonstrated that variation in how autistic people are rated is explained more by individual differences among raters than it is by autistic traits.  If a non-autistic person was familiar with autism and presented with a low degree of negative stigma, they were more likely to rate an autistic person positively – as long as they knew the person had an autism diagnosis.  People who were unfamiliar with or had a negative stigma of autism tended to rate autistic people more unfavorably if they knew about their diagnoses.  

Together, these three studies indicate that autistic people are not completely at fault for being judged and avoided by non-autistics. Anti-autistic bias plays a significant, often unfounded (look at how those biases disappeared when raters couldn’t see the person!) role.

Let’s take a look at some of the biggest autism stereotypes, one at a time. Let’s see if there are any patterns that non-autistic people have been overlooking.

“Autistic people are bad at social interactions.”

This is a big one; if you hold any stigmas about autism, you probably have this one. Autistic people are bulls in delicate little china shops, thrashing around breaking everything and making everyone miserable because we have no idea what is going on or how we’re supposed to behave. Right? Maybe. Maybe not.

The Double Empathy Problem is a theory posited by Damian Milton in 2012, referring to the breakdown that occurs between two people who have fundamentally different ways of perceiving and understanding the world. This is a reciprocal process, meaning neither party is individually at fault. However, non-autistic people are often “wildly inaccurate” when they attempt to interpret the mental and emotional states of autistic people. According to Milton: “Such attempts are often felt as invasive, imposing and threatening by an ‘autistic person’, especially when protestations to the contrary are ignored.” 

Milton later points out that any mismatch in communication between a non-autistic and autistic person is likely to be seen as “more severe” by the former because it is not a frequent occurrence for them.  Autistic people, on the other hand, experience social clashes with non-autistics all the time.

Studies are mixed on how accurate autistic people are at interpreting other autistic people, but first-hand accounts from autistic adults show a tendency to prefer the company of fellow autistics, further suggesting that the perception of social awkwardness is not entirely autistic people’s fault.

UPDATE 4/24/19: A new study from the University of Edinburgh confirms that autistic people 1) share information effectively with other autistic people, 2) enjoy interacting with other autistic people, 3) have a higher rapport with autistic people in a way that is noticeable to people outside the interaction. All of these patterns match the way that non-autistic people interact with other non-autistic people; however they all decrease when there is a mix of autistic and non-autistic people. So, quality of social interaction appears to rely on communication partners having the same neurotype, rather than a specific one.

“Autistic people lack Theory of Mind.”

There’s a video on YouTube that I had the displeasure of watching recently, in which a prominent British psychologist explains that Theory of Mind – the ability to interpret other people’s thoughts and perspectives when they are different from your own – is what separates people from animals, the foundation of what makes us human.

She then goes on to explain, without a hint of irony, that autistic people don’t have Theory of Mind.

The complexities of Theory of Mind (ToM) in autistic people are beyond the scope of what I’m talking about today.  To say that we lack ToM is reductive and untrue, but it’s also not accurate to say that we develop and access it in the same way that non-autistic people do.

That said, saying in an educational video that autistic people are missing a fundamental tenet of humanity shows an significant lack of ToM on her part, either through the assumption that no autistic people will ever see it (false) or that autistic people who do see it won’t care (definitely false).

Also, as I mentioned above, non-autistic people are consistently inaccurate at interpreting the mental states of autistic people. This pattern is hard enough for autistic people who can explain why and how breakdowns happen; for people who lack the communication skills, it can be downright devastating.

For all that non-autistics believe autistic people lack ToM, when it comes to interacting with us, the reverse is often closer to the truth. Some other examples include:

  • Not knowing and/or caring why autistic people don’t always follow complex and arbitrary social rules
  • Minimizing sensory processing needs 
  • Saying, “Everyone’s a little bit autistic”
  • Insisting on person-first language even after an autistic person states a preference for being called “autistic”
  • Assuming autistic people fall into two camps:
    • People who are unable to make decisions about their lives, express preferences (or non-preferences), or understand anything around them (“low-functioning”)
    • People who don’t really have a disability, and thus need no accommodations or understanding (“high-functioning”)
  • Ignoring tips and recommendations for how to communicate with people who have processing difficulties
  • Pretty much everything I’m about to say under the next point

“Autistic people have no empathy”

Autistic people see this one a lot. Empathy – the ability to care about other people’s feelings even when they are different from your own – is something we are told we lack. None of the stigmas about autism are particularly fun to listen to, but this one probably hurts the most, especially given the number of autistic people who describe the experience of “hyper-empathy,” which is the literal opposite.

Also, despite insisting that autistic people are the ones who lack empathy, non-autistics have done the following:

(CN: abuse, ableism, ABA, violence, death)

  • Written and produced a play about how hard it is to parent an autistic child, complete with jokes at autistic people’s expense and a puppet portraying the autistic character.  Here is a Twitter thread with a detailed summary of the play.  For more information, look up #PuppetGate. 
  • Published books, blogs, and videos about how hard their lives are because of their autistic children. Sometimes they film autistic children having meltdowns; other times they give detailed descriptions of how they heroically tortured their autistic child in an effort to cure them.
  • Written an article called “The Perks of Bullying” referring specifically to autistic students.
  • Bullied autistic students significantly more often than they bully non-autistic students. (You can find a link to that study in the same post that I linked above.)
  • Published a video during which a mother described how she almost committed suicide because of her autistic child, but didn’t because her other child was neurotypical.
  • Given professional talks with titles or descriptions that explicitly refer to autistic people as being difficult to work with.
  • Suggested that autistic people are lying about having meltdowns in order to garner sympathy.
  • Said terrible, demeaning things about autistic people who are physically present at the time.
  • Said terrible, demeaning things about autistic people online, then acted surprised when autistic people noticed and called them out.
  • Made terrible, demeaning jokes about autistic people, then apologized to families and caregivers rather than autistic people themselves.
  • Physically and emotionally abused autistic children for a living and called it “treatment.”
  • Restrained an autistic student so forcefully that he died.

There are more examples out there, but this is a long list and I’m exhausted. Hopefully you get the idea by now.  

“Autistic people are rigid and inflexible.”

Last year I was having a conversation with a non-autistic person about how when I’m hiking alone I sometimes get so “in the zone” that I don’t think to make eye-contact and say “hi” to a hiker who passes me.

They were appalled. They told me that if anyone did that to them, they would be furious. They told me I should always say hi to strangers while I’m hiking because if I fell and got hurt, I would want them to come back and help me. 

I asked them to clarify – were they saying they would refuse to help an injured person simply because they hadn’t said “hello” beforehand? That it’s reasonable to expect others to do the same? They clarified: that’s exactly what they were saying.

This story probably fits under a couple different headings, but I’m putting it here because it’s an absurd example of the ways that non-autistics rigidly adhere to arbitrary social norms, unilaterally thinking terrible things about people who don’t follow their rules.

In another example of inflexible thinking, non-autistic people frequently have difficulty accepting that I can be autistic and also have valid clinical knowledge and experience. In almost every conversation about autistic people in a clinical space (even spaces that are designed to be progressive and inclusive), if I don’t immediately label myself as “an autistic SLP,” inevitably someone assumes I am one but not the other.

I have started honest, productive conversations with BCBAs about ABA Therapy, only to be abandoned after I reveal I’m autistic.  In fact, a non-autistic clinician once left a conversation about autism and ABA with me, a school-based SLP, in order to privately continue talking to my non-autistic, neither-clinician-nor-educator wife, even though my wife had already stated that she was not qualified to participate in the discussion. It was wild.

There’s also the widely-held assumption that stimming and special interests are always bad (some links to resources in this post) despite studies suggesting that this is not the case.  There’s the near-ubiquitous insistence on eye-contact despite evidence that it is legitimately painful for autistic people.  

Speaking of empirical studies, there’s also the fact that scientists, like the general population, tend to view autistic traits as inherently bad. 

For example, this book that I love called out the double standards in interpretation of neuroimaging studies. Does more blood flow to a certain part of the autistic brain during some tasks? Either that part of the brain is over-active, or autistics have to work harder on that task. Less blood-flow? It’s under-used or under-responsive. Autistic people don’t get to win when non-autistic researchers make all the rules.

Researchers presume deficits in autistic people even with traits that have clear positives. For example, because autistic children are less immediately possessive of new toys or less likely to be influenced into perceiving or reporting incorrect information than non-autistic children are, these traits are interpreted as symptoms of social impairment. I particularly enjoy the moment in the latter study in which the writers point out that “being less susceptible to social influence resulted in the older autistic group performing more accurately than their neurotypical counterparts” as a brief aside in the middle of their discussion about how this finding is a great indicator of autistic people’s social impairments.

There’s a pattern here. Over and over again, non-autistic people assign stigmas to autistic people, which become so forcefully engrained that it causes them to do and say things that fall under the very stereotypes they assign to us. Sometimes it’s funny.  Sometimes it’s hurtful.  It’s always exhausting.

And I’m tired.  I’m really tired.

I’m tired of defending my personhood to people who make all manner of verbal contortions in order to frame me as being in the wrong.

I’m tired of worrying that non-autistic people are going to take away my job, my driver’s license, my right to vote, or my ability to make legal or medical decisions.

I’m tired of having conversations that inevitably descend into repetitions of “no YOU are a bad person.”

I’m tired of spending a portion of my job trying to undo damaging effects of ABA, only to be yelled at when I point out that this is something I have to do.

I’m tired of being pathologized by people who know I’m autistic, and I’m tired of being incited to pathologize autistics by people who assume I’m not. 

I’m tired of being excluded from clinical spaces and discussions unless I hide part of my identity.

I’m tired of being ignored or insulted when I point out that any of these things are happening.

And I’m tired, so tired, of non-autistics displaying the very stereotypes they assign to people like me in order to deny our humanity.

You Should Read This Book

A new copy of the textbook "Autism: A New Introduction to Psychological Theory and Current Debate" by Sue Fletcher-Watson and Francesca Happé

I am not a book reviewer. Sure, I posted a few rants about books I loved (or hated) on a certain unnamed bookish social media site before it got all problematic, but I don’t review books for a living and I probably never will.

I AM, however, an autistic Speech-Language Pathologist (SLP) with an undergraduate degree in Psychology and 5-ish years of clinical experience, preceded by 8-ish years of experience working with disabled adults and children, including but not limited to autistic folks.

So…I sort of know what I’m talking about?

Autism: A New Introduction to Psychological Theory and Current Debate is an undergraduate-level textbook written by two psychologists in the UK. An update to a previous edition written in 1994, Autism provides a concise but nuanced introduction to the scope and variety of behavioral, biological, cognitive, and social theories of autism, while commenting on many of the most hotly debated issues in and around the autistic community today. It’s well-organized, informative, easy to follow, research-based, compassionate to autistic people as well as non-autistic families without ever endorsing the problematic facets of either side, and – most importantly – inclusive of autistic voices at every step.

The book consists of ten chapters: an introduction to autism and the levels of psychological study, the history of autism, behavioral theories and research, biological theories and research, three chapters on cognitive theories and research (primary deficit, developmental trajectory, and information processing), social impacts, and future directions. Each chapter cites a variety of evidence for and against the theories that are presented, critiquing studies where applicable and applying findings to theoretical frameworks and real-life issues.

At the beginning of every chapter is a two-page illustration, by autistic artist Marissa Montaldi, of the concepts and debates to be introduced. Each chapter concludes with a 1-2 page response from an autistic person. These commentators include scientists, doctors, artists, parents, activists, and teachers, with responses ranging from academic reflection to anecdotes, each with the reminder that autistic voices matter in every aspect of these discussions.

Although they are not themselves autistic, Professor Francesca Happe and Dr. Sue Fletcher-Watson frequently emphasize the importance of listening to the autistic community during the research process as well as the development of clinical practice and community supports. As an introductory textbook, Autism does not have time to delve deeply into specific issues or debates, but it outlines most, if not all, of them with careful nuance and compassion. These discussions include:

  • Person-first vs. identity-first language
  • Functioning labels and the concept of severity
  • Applied Behavior Analysis (ABA) and other compliance training
  • Tension between autistic adults and non-autistic families of autistic people
  • Autistic self-advocacy/disability rights
  • The impact of gender on presentation and diagnosis
  • The social model of disability
  • Problems with the concept of an autism ‘cure’ or ‘prevention’
  • The myth of empathy/ the ‘double-empathy problem’
  • “Difference” vs “deficit”
  • In-group/out-group bias between non-autistic and autistic people
  • Pressures placed on families of young autistic children
  • Lack of support for families of autistic people
  • Pseudoscience
  • Autism in the media
  • The role of autistic parents of autistic children
  • Lack of supports for aging autistic people

Issues in clinical and psychological research are also discussed, including heterogeneity among autistic people, difficulty designing robust experiments to test cognitive theories, lack of accessibility for autistic people who want to work in research and academic settings, and lack of testing for theories or concerns originating from autistic people. In one of my favorite quotes, the authors call out researchers for biased interpretations of research results, pointing out that nearly every difference between autistic and non-autistic people is interpreted as an impairment in the former. For example:

In neuroimaging research, differences in blood flow during a task are interpreted to show problems in the autistic group, regardless of the direction of difference from control data. If the autism group shows greater brain activity, they are ‘having to work harder to solve the task,’ but if they show reduced activity, they lack the expected neural specialisation of dedicated brain regions for the key computations!

pg. 45

I have not read the particular research they’re referring to here, but I HAVE noticed this pattern in cognitive/linguistic studies, and it’s incredibly frustrating. To see non-autistic psychologists confronting that in a textbook gives me hope for the future of academia, and I don’t mean that as hyperbole.

Between my undergraduate degree, Masters degree, and 5+ years of continuing education/professional development, I have read and listened to many, many descriptions of theory and/or research related to psychology, communication, and – yes – autism. Very very very rarely do I find academics or clinicians who view autistic people as a valuable part of the process.

In my last post, I included two screencaps of SLP seminars whose titles or descriptions blatantly insulted autistic people, but there are many examples of ableism that I haven’t documented. In the past few weeks alone, I have encountered anti-autistic ableism in two different SLP social media spaces that were designed to be inclusive and progressive. From in-jokes at the expense of autistic children, articles about the “perks” of bullying, lectures referring to “those POOR families,” assumptions that autistic adolescents will never date or maintain friendships without clinical intervention, unexamined celebrations of ABA and the man who founded it, to intentional exclusion of autistic people from conversations about “cures” and “treatments,” it has been clear to me throughout my career that the world of SLP (at least here in the States) does not consider autistic people to be valuable contributors, more or less that we may also be clinicians.

This is not to suggest that only SLPs are capable of system-wide bias against the people we are trying to serve, or that ableism only exists in the US. Look, for example, at that horrible play, or the recent, poorly-researched and reported changes made to driving license documentation in the UK. Look at the new-ish trend of mainstream media feeling shocked and inspired that some autistic people manage to have – wait for it – ACTUAL CAREERS, or the people who respond to those reports by immediately questioning the validity of their diagnoses. Perhaps you’re more interested in the discussions around legal loopholes that allow employers and contractors to pay disabled people less than minimum wage, if they pay at all. Three days ago was the Disability Day of Mourning, an annual tradition to remember disabled people who were murdered by their families. These past several weeks have been rough for autistic people, and it’s not even April yet!

All this to say, Autism was a breath of fresh air for me as an autistic clinician. After years of arguing, dodging, and/or hiding from anti-neurodiversity in my field, it’s easy to wonder if I’m the one in the wrong. Unlearning damaging stereotypes and practices is a long and ongoing process, one that is rarely if ever supported in clinical and academic culture, and sometimes I can feel years of pent-up internalized ableism just waiting to rush back and overwhelm me. This book is one of the first scholarly writings I’ve seen that does not lay the blame for every bad thing that happens to and around autistic people entirely at the feet of autistics, and that change is more valuable than I can possibly explain.

You can order the book from the publisher at their website.

Being an Autistic SLP

Being an Autistic Speech-Language Pathologist (SLP) means working with students/clients with whom I identify more closely than I do many of my neurotypical (NT) colleagues.

Being an Autistic SLP means seeing descriptions of lectures and seminars that look like this, because speakers assume I’m in on the joke:

Being an Autistic SLP means sometimes having echolalia with the word “echolalia.”

Being an Autistic SLP means cringing internally and bracing myself every time I collaborate with someone who has a background or interest in ABA.

Being an Autistic SLP means that Pragmatic Language therapy usually feels like something I should be receiving rather than providing.

Being an Autistic SLP means I am hyperaware of the difference between social communication skills that are necessary or functional and ones that are merely play-acting in order to blend in with a NT world.

Being an Autistic SLP means that a unique communication profile is so fascinating to me that I could have a one-sided conversation about it for a long time if left unchecked.

Being an Autistic SLP means I will target “looking at a communication partner,” but I will not demand eye-contact. It also means I understand why the difference is significant, likely better than my NT colleagues do.

Being an Autistic SLP means that burnout is a very real and constant threat. Being Autistic means I need to pace myself or I will crash, that the act of pacing myself is itself an expense of energy. Being an SLP means that pacing myself is discouraged at almost every turn.

Being an Autistic SLP means reducing the stigma of using fidgets because I allow myself to use them during speech sessions.

Being an Autistic SLP means I know how to use a person’s stims and special interests to motivate, inspire, and develop skills, instead of forcing them to constantly suppress.

Being an Autistic SLP means I understand and acknowledge the difference between wanting to play alone and wanting to play with peers but not knowing how. It means I know exactly why this difference matters.

Being an Autistic SLP means that without Google Calendar and its Task Pane, I would never get anything done on time.

Being an Autistic SLP means I hyper-empathize with people I work with, including coworkers, students/clients, and families. If I let myself, I will feel each problem as if it affects me personally, and I will have a difficult time extracting myself from it.

It also means that from time to time I may appear not to empathize at all, because I’ve taken on so much that I need to disengage or I will melt down.

Being an Autistic SLP means that I’m doing at least twice the emotional labor that my NT coworkers are doing just to get through a workday in which we have the same or similar tasks.

Being an Autistic SLP means working so hard to mask while I’m conducting therapy, consulting, or attending meetings, that I rarely if ever socialize during work downtime. It means NT coworkers may see me as shy at best and unfriendly at worst, when in reality I am prioritizing how I spend my limited emotional energy.

Being an Autistic SLP means that I lack a thick skin; at best I can pretend to have one until no one is looking. It means if a parent yells at me during a meeting, I may not be able to conduct therapy for the rest of the day.

Being an American Autistic SLP means belonging to a professional organization that holds a very strong bias against people like me. It means being part of a culture that does not believe I exist.

Being an Autistic SLP means that if a student/client or family member is trying not to cry, I will likely remain unaware until the first tears fall. It means that if I’m talking when this happens, I will blame myself and perseverate on everything I said and did for a long time after it’s over.

Being an Autistic SLP means that adapting to sudden change is difficult or exhausting for me. I do it because I have to, but I may need to compensate in ways that seem strange or unrelated. When you pass me in the hall and I am looking at the floor while flexing my fingers instead of smiling and saying “Hi,” it may be because three students were unavailable and/or I’ve been called in to a last-minute meeting or observation.

Being an Autistic SLP means I will email caregivers instead of calling them whenever I possibly can.

Being an Autistic SLP means that not only will I insist that you give students/clients time to process what you’ve said, but I will also find ways to get you to do that for me. It means that if I really trust you, I may even ask directly.

Being an Autistic SLP means that I show up for meetings exactly on time because I don’t have the energy for the small-talk that inevitably happens before they start.

Being an Autistic SLP means that you may very well find me pacing, gesturing, and/or whispering about anything from the development of voiceless fricatives to effective word-retrieval cueing techniques to the importance of Core Vocabulary on a communication device. It may not even be relevant to someone I work with; I just like thinking and talking about it.

Being an Autistic SLP means that I needed this game in my life ten years ago, and I am anxiously awaiting its release.

Being an Autistic SLP means that interacting with Autistic students/clients is usually easier for me than interacting with NT coworkers or caregivers. It is probably related to the fact that I am more comfortable with Preschoolers than Middle or High Schoolers.

Being an Autistic SLP means that occasionally I am too dysregulated to conduct therapy, and I’m going to need you to trust that when I make that call, it’s for the students’/clients’ good as well as mine.

Yes, being an Autistic SLP means that things that NT colleagues find intuitive or effortless are difficult or downright impossible for me, but it also means that I will see things they don’t. I will feel things they don’t. If they can trust that I exist and I can trust that they won’t pathologize me, we can learn a lot of valuable things from each other.

It really IS about ethics this time: cultural competence, evidence-based practice, and LGBTQ+ issues in allied health

Two years ago, I was doing a home visit as part of my job as an Early Intervention speech-language pathologist (SLP), when a parent suddenly and unexpectedly launched into an angry, homophobic rant.  We had been discussing age-appropriate activities to encourage language development, and I had suggested several pretend-play ideas, a few of which clashed with this parent’s perception of the child’s gender.

In the resulting diatribe, during which the phrase “no [offspring] of mine” as well as several gendered and homophobic slurs were used liberally (so to speak), the parent argued that people could choose to be “homosexual,” that homosexuality could be triggered by gender-nonconforming behavior, and – of course – queerness of any variety  was  “unnatural.”  The other parent’s response made it clear that the two were in full agreement on this topic.

At this point, I became acutely aware of the fact that both parents were positioned between me and the door.

My mounting anxiety dissipated when, in a moment of dramatic irony, the tirading parent made this statement: “I’m [xx] years old and I’ve never met a gay person in my life.” I resisted the urge to giggle hysterically and/or pointedly re-introduce myself.  Instead, I directed the conversation to the previous topic and continued the appointment with every ounce of professionalism I could muster.

I should note that neither parent ever said anything even hinting at violence.  Between that and a fortunate lack of gaydar in the family, it was clear that my – and the child’s – safety  was not in question.  So, despite vehemently disagreeing with their beliefs, in spite of the many terrible situations that may arise as this child grows older, even though it gave me a bad taste in my mouth to even return to that house, I continued to work with the child until months later, when for unrelated reasons I left Early Intervention altogether.

In short: I did my job.

When I became an SLP in the United States, I signed a Code of Ethics by the American Speech-Language Hearing Association (ASHA).  Among other things, this code clearly states:

Individuals shall not discriminate in the delivery of professional services or in the conduct of research and scholarly activities on the basis of race, ethnicity, sex, gender identity/gender expression, sexual orientation, age, religion, national origin, disability, culture, language, or dialect.

“Culture” being the keyword here.  In signing the ASHA code of ethics, I agreed to abide by the principle of “cultural competence,” as defined here:

Cultural competence involves understanding and appropriately responding to the unique combination of cultural variables—including ability, age, beliefs, ethnicity, experience, gender, gender identity, linguistic background, national origin, race, religion, sexual orientation, and socioeconomic status—that the professional and client/patient bring to interactions.

Since neither my nor the child’s safety was in question, I had no ethical reason to refuse to work with this family. Had I chosen not to return, I could have delayed services for several weeks while the family waited for another provider to be assigned, simply because their belief system clashed with my identity. This was not what I had agreed to do as an SLP. This was not culturally competent.

I tell this story to make it clear that cultural competence and anti-discrimination work in both directions.

From time to time, I encounter articles or discussions related to queer issues in SLP spaces on social media.  For example, ASHA has posted a few articles about voice specialists who work with transgender people.  Typically, the response to these articles is overwhelmingly positive, which gives me a warm fuzzy feeling and makes me feel proud to have chosen this career.

Yet, there’s always that one person.

In response to articles about voice work with transgender people, the dissenter typically expresses the hope that insurance companies are not expected to pay for these services.  Other comments invoke the “love the sinner, hate the sin” cliche. On rare occasions, I have even seen comments similar to those made by the homophobic parent.

Every time this happens, there’s a sizable backlash to which the the dissenter  responds defensively.  You bigot, they say to people who find their homophobia and/or transphobia offensive, how dare you discriminate against my right to have personal beliefs?!

Moving past the issues with that statement – not because they’re irrelevant but because they’re outside the focus of this entry – I feel the need to point out that ASHA-certified SLPs are ethically required to put our personal beliefs aside in professional contexts. We can have our opinions, but we check them at the door when we’re working.  Neither is there room for personal beliefs, especially ones that have no basis in scientific evidence, when we discuss issues related to professional practice.

Which brings me to another Ethic in ASHA’s Code:

Individuals who hold the Certificate of Clinical Competence shall use independent and evidence-based clinical judgment, keeping paramount the best interests of those being served.

Evidence-based practice means that we make clinical decisions, such as who to treat, how to treat them, and when to stop, based on up-to-date and well-conducted empirical studies. If you want to believe that queer people are “unnatural,” you do so in your own time until you have scientific evidence to support your claim.

To that end, there is evidence to support the legitimacy of gender dysphoria, as well as mixed but largely supportive evidence that transitioning significantly benefits transgender people.  Further research is needed, of course, but we have passed the point of being able to claim scientifically or professionally that transgender people are “unnatural” or “wrong.”

Instead, we as SLPs should be questioning the role of voice in the transition process.  Is voice change a medically necessary component of transitioning?  Can hormone therapy sufficiently alter voice, or do transgender people require additional  services?  How do we differentiate between transgender people who medically require SLP services, and people for whom it is elective?

I am not a voice specialist.  I don’t have the answers to these questions.  If the research exists, I haven’t found it.  If it doesn’t, I hope someone is conducting it.  I’d love to read the results.  Until then, we need to approach this issue with cultural competence, relying on the research we do have and leaving our personal biases out of the discussion.

Cultural competence in LGBTQ+ issues is not limited to voice therapy. Queer people exist everywhere: in hospitals, rehab centers, nursing homes, schools. An Early Intervention SLP may very well be asked to work with a toddler who has two moms or two dads.  In any case, the ASHA Code of Ethics requires SLPs to treat queer clients/patients/students, families, and caregivers  with the same respect, dignity, and clinical expertise that we treat cisgender-heterosexual people, regardless of personal beliefs.  As a queer SLP, I am required to treat openly bigoted clients, caregivers, and families in the same way.

So yes, when a patient says “I disagree with gays getting married” during a language assessment, I put aside my emotional reaction in order to plan treatment.  Their belief that I shouldn’t be allowed to get married does not negate their right to regain their communication skills, just as choosing to treat this person does not invalidate my commitment to marriage equality.

If you want to attend a church that believes queer people are “unnatural,” if you choose to reject friends and relatives who come out, those are your decisions.  As soon as you project your beliefs onto the people you work with, you violate the code of ethics you signed when you became certified.  I agreed to abide by that code and I renew my commitment to it every year. I do so with the understanding the SLPs across the country are doing the same.