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 to: 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 a 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 away 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, the play’s title, or the author’s name. 
  • 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.

“In a world that doesn’t want queer people to be happy, queer joy is subversive.”

This was the thesis statement of the first panel I attended last weekend at Flame Con, an annual comics convention in New York City for LGBTQ+ people.  This panel “The Subversive Simplicity of Queer Joy” provided a much-needed affirmation that queer people – in fiction and in real life – deserve happiness just as much as cisgender-heterosexual people do, even if most of the world doesn’t want us to have it.

Flame Con is a utopian rainbow bubble full of magic, wonder, inclusion, and uninhibited joy. Flame Con celebrates people’s differences and tells queer people of every race, ethnicity, ability, neurotype, religion, age, and gender: “You are not alone and you deserve to be happy.” Purely by coincidence, the day before the con I also attended an unrelated event celebrating queer love and joy in the real world. For me, these two events could not have come at a better time.

Warning: I’m going to talk about death and violence in fiction.  I will not name names and I will be as vague as I can.

This means I can’t provide links as often as I usually do.  Instead, from time to time I’ll mention a term to research if you want more information. Be warned that you will likely encounter spoilers if you choose to do that.

Again: if you don’t want to read discussions about non-specific queer character death, you’ll want to leave this page now. I understand.

Anyway.

This past weekend, I spent three days in spaces where the idea that queer people deserve happiness was not in dispute. This provided a refreshing change from the past two weeks, as well as the 12-13 years before that, when queer joy has been refuted or rejected with alarming consistency.

Queer characters, despite under-representation in mainstream media especially, are disproportionately killed in fiction.  This pattern includes movies, television shows, books, podcasts, video games, and comics. Even fan-created webseries are not above giving queer characters the axe.

(For more info, look up “Bury Your Gays.”)

This of course means that many queer characters who are still alive at the end of their stories are mourning the death of a significant other.  There is a history to this: In the first half of the 20th century, films and books were prohibited from portraying gay or lesbian characters who did not eventually die or marry a character of a different gender.

(For more info: “Motion Picture Code,” “Lesbian pulp fiction.” I don’t know if there were rules about transgender characters, but I think I can make an educated guess.)

Although those rules aren’t technically in place anymore, the pattern remains. To this day, stories about LGBTQ+ characters disproportionately end in tragedy and grief.

An article in The Guardian in 2013 (linked article contains SPOILERS for several pre-2013 films featuring LGBTQ+ characters) stated:

Whether it’s suicide, AIDS (a particularly maudlin [Actor] performance in [Film] employs both), being beaten to death, state execution, getting shot, or getting raped and then shot, LGBT characters are just not allowed the happy endings that their straight counterparts enjoy. My personal favourite comes from [Film Title With Link to Said Film], in which [Actor] simply drops dead for no reason. Presumably overwhelmed by sheer homosexuality, his heart can no longer keep beating. Beware, non-heterosexuals: Sudden Gay Death Syndrome can strike anywhere.

The first time I saw a romantic relationship between same-gender protagonists on mainstream television, I was in my late teens. I felt drawn to them, fascinated by them for reasons I could not identify. This beautiful couple grew, struggled, and overcame hardships together, and I fell head-over-heels for them before I realized they were like me. This relationship formed one of the first steps of my (very) long journey towards self-understanding.

Then one of them died suddenly and unexpectedly. The other spent the rest of the series in various stage of grief and heartbreak as she gradually overcame the loss. Even though other characters on the same show died before and after this character did, her death in particular ripped me apart for reasons I did not understand at the time. It was not until several years later, when a different show killed off a fan-beloved lesbian character, that I started to find the words to explain why the experience of grieving a queer character was so different from mourning a straight-cisgender one.

The over-representation of LGBTQ+ character death can cause real damage to queer people who are beginning to understand their identity.  Representation in fiction is a powerful tool that can shape the identity and self-worth of its audience, but it is also a dangerous one.  How can it be safe for queer people to own who we are if all that awaits us is tragedy? How can we learn to value ourselves when media is constantly telling us we deserve to die?

Since queer character death is so frequent in fiction, there is a ton of variation in terms of how it is presented and how each incident fits into its respective narrative.  For example, there are contexts where character death is more likely, including war, dystopia, frontiers, and historical or pseudo-historical settings.  In narratives that involve action, violence, and risk, it’s unrealistic to expect all characters to survive.  Even though LGBTQ+ people form a very small percentage of these characters, its neither fair nor practical to ask each one of them to be spared.

Sometimes the death of a character – queer or otherwise – serves the plot in a way that is organic, meaningful to the story, or respectful to the character.  Obviously that judgement call that will vary from person to person, but it’s not productive to pretend that well-written queer character death isn’t possible.  Also – especially with long-running television shows – there are times when a character must be written off because the actor is no longer available to play them.  In these instances, death may be the most reasonable way to make this work with the narrative, rather than performing plot-aerobics to remove that character permanently .

That said, there are several patterns that can make instances of queer character death more problematic than they already are. Frequently, the death of an LGBTQ+ character is directly related to their queerness; examples include AIDS, hate crimes, or suicide.  Many queer characters die minutes after confirming or advancing a romantic relationship and/or sleeping with a character of the same gender. Alternatively, they may be killed off in the same episode or book in which their relationship was confirmed, advanced, or revealed to other characters.  These plot decisions tell the audience that queerness is the reason these characters died.

Queer character death can also feel pointed if the death doesn’t serve the narrative or fit the setting.  Again, this point depends on subjective judgements made by readers or viewers.  Still, when a cis-het character dies in a way that feels incongruous with the story, it may be seen as bad writing or death for shock-value (or one of a number of other problematic tropes).  When it happens to an LGBTQ+ character, it fits into larger pattern which suggests that creators see queer characters as dispensable or don’t know how to write LGBTQ+ stories with happy endings.

This interpretation carries even more weight in stories where only queer characters die, in endings that show most or all cis-het characters still alive while the one, if any, remaining LGBTQ+ character grieves.

Regardless of individual circumstances, the sheer number of queer character deaths in relation to the number of queer characters in fiction is so disproportionate that it sends a message on its own.  In contrast, the underrepresentation of queer stories with happy endings, especially in mainstream media produced by larger corporations, is staggering.

(For more info, check out this infographic about dead lesbian and bisexual women characters on TV. Obvious warning for SPOILERS for a whole bunch of shows released in or before 2016.)

Yes, there are a lot of complicating factors to the “Bury Your Gays” trope.  Almost inevitably, especially in recent years when this trope has been getting more attention from mainstream media, every time a queer character is killed off we have the same conversation.  Each time, we ask if this particular death made sense in this particular instance. No detail is left unturned. There are productive and unproductive arguments from both sides of the question.

The trouble with the “This Time It’s Okay” argument is mainly that it ignores or dismisses the larger context where LGBTQ+ character death keeps happening.  Over and over again, we watch queer characters die. Again and again, we witness the one surviving queer character grieve while the cis-het characters enjoy happy endings.  Even in the best of circumstances, queer character death is problematic simply because it exists in a world that feels that LGBTQ+ characters – and by extension, real people – do not deserve the same joy as their cis-het counterparts.

Here’s a (spoiler-free) quote from the writer who created the infographic listed above [brackets are my additions]:

Stories exist in imaginary worlds but they are consumed in the real world, where, just this week [March 2016], North Carolina passed sweeping and unprecedented anti-LGBT legislation. And where three presidential candidates don’t believe gay people should have the right to get married [update: neither does the current Vice President]. And where a gay person can be fired simply for being gay in most states [still true]. And where LGBT youth homelessness is rampant [yep]. And where LGBT bullying occurs with alarming regularity in schools [definitely still true].

We need hope in stories. We need light in stories. And we need stories to work their magic in the lives of the people who would oppress and persecute us because we’re gay. Stories are fatal to bigotry.

To care about story isn’t to ignore the darkness of the real world; to care about story is to put your hope in something that changes the real world, more than anything else. There’s a reason all religious texts are made up mostly of stories. There’s a reason the same-sex marriage approval rating in the U.S. rose in direct proportion to the number of gay characters on television. Story gets inside us and changes the alchemy of who we are.

And yet, over and over again we have the same conversation. The same points are hashed out time and time again. It’s frustrating and discouraging. It’s exhausting.

Several years ago I came across an award-winning graphic novel in a bookstore. I had heard of it among recommendations for stories centering same-gender romance, so I picked it up. As I was reading the summary and studying the cover art, a feeling of dread washed over me. I had already had the ‘Bury Your Gays’ conversation more times than I could count.  Over and over again I had let myself become invested in LGBTQ+ characters, only to watch their stories end in tragedy. Again and again I had bemoaned queer character death with (mostly queer) people who understood and (mostly non-queer) people who didn’t. At that moment, I realized that it was not worth putting myself through that again, even for the best of stories.

I flipped to the last few pages of the book, and there she was: one of the main characters, standing alone and sad at the other’s grave.

I closed the book, put it down, and walked away. That has been my pattern ever since. Movie/show/book/comic with queer characters in it? Great. Tell me how it ends.  Still ongoing? I’ll wait. A queer character dies? No thanks.  There are occasional exceptions of course, but for the most part I stick to this rule.  Honestly, I’m so grateful that I’ve done this. Yes, it means that my consumption of LGBTQ+ stories is significantly limited, but to me it’s been worthwhile.

For one thing, I haven’t been blindsided by queer character death in over a decade.  On the rare occasions when I do choose to read or watch a story featuring queer character death, I can brace myself for it. Some people may argue that knowing ruins the story, but if the story doesn’t have an emotional impact without a sudden, unpredicted death of an LGBTQ+ character, then to me it’s not worth investing my time or energy.

At the aforementioned Flame Con panel this weekend, one of the panelists talked about the value in reading or watching stories by creators who value queerness. When queer audiences know or trust that all the queer characters are going to survive, we can relax into a story and become emotionally invested in the characters, enjoying the adventures without the feeling of dread that comes with a queer character whose fate is unclear.

So why, after a weekend of constant affirmation of the value of queer joy in fiction and real life, would I write a long post complaining about queer tragedy?

Two weeks ago, ‘Bury Your Gays’ took me by surprise for the first time in almost a decade.  Without knowing it was going to happen, I saw one queer character die and the other grieve, while all of the cis-het characters in the ensemble cast – including at least four different-gender couples – enjoyed happy endings.

And yes, it hurt just as much as it did all those other times.

*(If you’re curious, Google “bury your gays 2018 backlash.” Also, you’re welcome for the amount of time I spent trying to find a search term that wouldn’t give anything away.)

So yes, I’ve spent the past two weeks having conversations that I had witnessed* but not directly engaged in for several years.  In the midst of this emotional hurricane, I’ve rehashed all the same points with people who feel that this specific instance is different, that under these circumstances queer character death is acceptable.  As usual, arguments on both sides range from calm and productive to hurtful and inflammatory.  Nothing about this situation is new.

*(Look up “bury your gays 2016 controversy”)

This. Keeps. Happening. Again and again we have these conversations. Over and over, queer viewers express anger and disappointment and are told we need to calm down.  We try to defend our right to survive and be happy, and we’re told that we’re over-reacting, that our expectations are unreasonable and it’s our fault for letting them get so high.  We point to the number of fictional queer casualties and are told to be grateful that queer characters exist at all.  We point to the demographics of the characters who are allowed to find joy, and we’re told to accept the story for what it is.

In the past decade, I’ve had this conversation more times than I could count, which is nothing on people who haven’t gone out of their way to avoid queer character death as I have. I can only imagine how they’re feeling.  Because I’m tired.  I am so very tired.

Which is why this weekend could not have come at a better time. Apart from one 3-minute incident from which I was able to extricate myself, Flame Con provided an affirming and invigorating experience in which attendees were told, time and time again, that our existences mattered, that our experiences mattered, that we deserve happiness and joy and we are not wrong to be upset when we are denied that.

Unfortunately, asking for that, even creating it, is a subversive act.  People who write queer stories are counteracting decades (almost a century) of media asserting again and again that queer characters can exist but they cannot be happy. A silly rom-com becomes an act of subversion when the main characters are the same gender; a fluffy teenage comedy with a transgender protagonist is a downright insurrection. Creating these stories, and supporting the people who do, is a political act, an inflammatory statement in a world that does not want to see LGBTQ+ people be happy.  But we do it.  We need it. Because queer people deserve joy too.

Autism Acceptance Month Master Post

April is a difficult month to be autistic. Every day we are bombarded with “awareness” campaigns calling us broken or diseased, spreading misinformation and fear, and promoting abusive practices “for our own good.”

But I talked quite a bit about ableism in my previous post.

Autistic self-advocates are taking back the month of April with a movement called “Autism Acceptance month.”  This year, I participated in autism acceptance by making one post to social media every day about the experiences of autistic people. I’ve compiled them all here.  This is a particularly long one, so I’ve separated and labeled each day for easy scroll-and-skim.  Enjoy!

 

DAY 1: What is Autism Acceptance?

According to the creators of Autism Acceptance: “During Autism Acceptance Month, we focus on sharing positive, respectful, and accurate information about autism and autistic people.

Autism Acceptance Month promotes acceptance and celebration of autistic people as family members, friends, classmates, co-workers, and community members making valuable contributions to our world. Autism is a natural variation of the human experience, and we can all create a world which values, includes, and celebrates all kinds of minds.

 

DAY 2: A$ in a nutshell

Because April 1st was a Sunday, April 2nd was the international “Autism Awareness Day” complete with the campaign to “Light it up blue.” At the school where I work, many teachers and paras wore matching blue T-shirts featuring cartoons of stick-figure children happily playing together, brightly-colored puzzle pieces, and a big yellow caption reading “It’s OK to be different!”

Which would be all well and good without A$’s long history of behaving as if the exact opposite were true.

On that day, I was working with a student in a classroom for young children with complex support needs.  Almost all of the students are paired with a para educator throughout the day.  As I was packing up my materials, I heard a para – who happened to be wearing one of those blue shirts – shout “STOP FLAPPING YOUR HANDS” to the 4-year-old student she was working with.  When I stepped around the divider to intervene, I saw the little boy fixing her with a deadpan expression and hand-flapping freely. I spoke to the para as diplomatically as I could, which perhaps wasn’t the best solution because even by the end of our conversation she still had no idea that she’d done anything wrong.

And that is the trouble with Autism Speaks in a nutshell. It’s okay to be different, except in ways that make neurotypical people feel uncomfortable, or worse: less proud of their openness. In those cases, difference is a problem that needs to be eradicated.

(Side note: I do speech therapy with this student, and we sometimes use movement stims to help him understand and retain the language that we target. It’s been really effective, and he loves coming to speech.)

 

DAY 3: Instead of giving money to A$, consider supporting organizations run by autistic people FOR autistic people.

In America, good examples include the Autistic Self Advocacy Network (ASAN) and the Autism Women’s Network (AWN)*. I’m not sure which organizations and/or charities are best in other countries, but feel free to comment if you know any!

*AWN has now changed their name.  See Day 26.

 

DAY 4: Thank you, ProloQuo!

Proloquo2Go is one of the most well-known communication apps for iOS. This app can turn an iPhone or iPad into a communication device, allowing a nonspeaking person to produce language by touching buttons on a screen.

Although a myriad of Augmentative and Alternative Communication (AAC) apps exist, Proloquo2Go is one of the biggest and widely viewed as one of the best.* Autistic people, many of whom are nonspeaking, form a large portion of their consumer base.

Unlike other companies that develop adaptive tools for autistic people, Proloquo honors Autism Acceptance month instead of Autism Awareness month.  Not only did they offer a sale with the specific word “Acceptance” (no puzzle pieces to be found!), but they also shared an adorable infographic about autism from the Neurodiversity Library.

Also there are more Neurodivergent Narwhals where that came from.  You’re welcome.

*As a speech therapist with an interest in AAC, I find Proloquo to be comprehensive and easy to navigate, but tougher to customize on-the-fly than other AAC apps. Also very expensive. Just in case you wanted to know.

 

DAY 5: What it feels like to be an autistic person of color in the eyes of the police

“I live in a world that fears my skin color and doesn’t want to understand how my brain works.”

In this article on the Daily Beast, Eric Garcia, an autistic person of color, describes his experience fearing police brutality on multiple fronts.

Hearing cops say they hadn’t meant to shoot the black man, but the autistic one, hit close to home. I feel less secure than white people with autism and less secure than my friends of color who are neurotypical.

It’s not surprising, per se, but it’s frustrating and disappointing.

In a way, the police using an autistic person as an alibi makes sense. A recent white paper released by the Ruderman Family Foundation showed that up to half of all people killed by police are disabled and a medical condition or “mental illness” is used to blame victims for their own deaths. On top of that, 80 percent of all cases involving disability are labeled mental illness.

Definitely worth a read.

 

DAY 6: Follow Friday Part 1. Neurodivergent Rebel

Neurodivergent Rebel has a blog with text posts, video posts, and pages of great merchandise on neurodiversity and autism acceptance. Her posts contain a variety of great insights on being autistic in a neurotypical world that insists on consistently misunderstanding us.  Check out her website, Facebook page, or Twitter handle. I have one of her tote bags, and I like it a lot!

 

DAY 7: Identity-first Language

Why “autistic people” instead of “people with autism?” I posted some links last month, but here are some more that explain the issue, and its importance, clearly and beautifully.

A quote from Identity-First Autistic on why language matters:

Because autism – and by extension autistic people, are demonised every day when our neurology is referred to as a sickness or a disease and we are called a burden and a curse…we believe that a positive change in language is the catalyst to a positive change in our thoughts and actions.

Another from ASAN breaking down the difference between PFL and IFL.

When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

 

DAY 8: ‘All the Weight of Our Dreams: On Living Racialized Autism’

This is an anthology of short narratives, essays, poetry, and artwork by autistic creators of color, discussing the intersection between autism and race in our white neurotypical world. It’s not easy to find in bookstores, but I did find a local independent seller who was willing to order it, and it is worth it! It’s a very powerful read, enough that I’m needing to go through it slowly with frequent breaks, but I am really enjoying it so far.

Also, Autistic people of color are not given enough of a voice in most spaces, and Autism Acceptance needs to work on fixing that. This is a great way to start.

Read more about the book on its website.  You can also follow two of the editors, Lydia X. Z. Brown and Morénike Giwa Onaiwu on Twitter.

 

DAY 9: Autistic Queer Theory 101

Intersectionality in advocacy doesn’t only mean acknowledging that not all autistic people are white; it also means recognizing that not all autistic people are straight and/or cisgender.  This introductory-level article on the Asperger/Autism Network (AANE) goes into it a bit more.

Because someone is diagnosed with an autism spectrum condition does not mean that person is less capable of determining their own sexual orientation or gender identity. It is more likely that family members or professionals will question their identification with these non-mainstream identities because of the autism profile and out of concern that their loved one will be part of yet another marginalized, vulnerable group.

 

DAY 10: On being an autistic woman

On April 9th of this year, Julia Bascom, the executive director of ASAN, made the keynote speech at a UN event on empowering autistic women and girls. Here is a transcript of her address, with some of my favorite quotes listed below.

As a society, we still see autism as a negative, sad, scary thing. But for autistic women, an autism diagnosis can be a tool for empowerment. It’s an answer and an explanation, it’s a way out of cycles of self-blame and guilt, it’s a passport to an entire community, and if we’re lucky, it’s a connection to the understanding, supports, and services we need in order to truly thrive, sometimes for the first time in our life.

Access to diagnosis, however, is still deeply inequitable. Autistic women and girls are diagnosed much less frequently than autistic boys, and we’re often diagnosed later in life, or after we’ve gone through a roulette-wheel of other labels. One of the most common ways for autistic women to get diagnosed, in fact, is after we bring our own children in for assessment. The diagnostic criteria for autism are normed off of 4-year old white boys in upper-middle class families in the US, so anyone who doesn’t fit in that box has an uphill climb.

It’s really powerful and moving.

It shouldn’t be surprising, but the needs and struggles of autistic women and girls are very similar to the needs and struggles of women and girls broadly. We need our voices to be heard and honored. We need access to education and employment, we need access to the tools that empower everyone to be a part of the world and in charge of our own destinies. We need equal pay, not segregated employment and subminimum wages. We need real education–not 40 hours a week of behavioral modification, not compliance training, not forced normalization…My life, in many ways, looks different from that of other women and girls–but in the essentials, it is exactly the same. I deserve that same endless possibility. I deserve that same support. I deserve to be my own best champion. I deserve to be my own sun, my own moon, my own stars. And none of that depends on how well I can make eye contact or how still I can sit or how fluently I can speak. This is my birthright as a woman. Autism shapes what it might look like, but it doesn’t change a single one of my rights.

 

DAY 11: Allyship 101

The truth is most autistic people are brushed away and passed off when the conversation turns to autism – and the megaphone is usually handed to our loved ones and our medical professionals. We need to have a voice and a say in the autism acceptance movement, and in how we’re treated with respect and dignity.

Interested in being an ally to the autistic community? Check out this article on Everyday Feminism for a list of great ways to start.

An accountable ally wants to amplify our voices and make them heard by a larger audience. An accountable ally wants to make sure spaces are accessible to autistic people. They work to respect and center our needs and wants.

An accountable ally is constantly challenging ableism – both other people’s and their own – because they know we’re all part of a system of oppression.

 

DAY 12: AAC and Voice

Augmentative and Alternative Communication (AAC) is a means of communicating without speaking (see Day 6 for an example of one of the biggest developers of iPad-based AAC; for one of the most famous examples of an AAC-user, look up “Stephen Hawking”).  A disproportionately large number of autistic people use AAC to communicate, whether it’s through iPads, picture boards, or something else.  The U.S. Education system is not very good at teaching nonspeaking autistic students, but thanks to the work of people like DJ Savarese, it’s getting better.

AssistiveWare, the company who developed the Proloquo2Go software (See Day 6), wrote a great article on AAC and voice in honor of Autism Acceptance month.

Some AAC users do call a voice – and you might have seen AssistiveWare using this kind of language too. But nobody can decide for somebody else what their true voice is.  Some people who need AAC don’t have access to it yet. Others can only express a limited range of messages and ideas with their system. Supporting people in these situations to expand their communication is important, but only part of the solution. We also need to work on respecting people for who they are now and learning to listen to the voice they already have.

 

DAY 13: Follow Friday Part 2. ‘Growing Up Aspie’

You can follow this comic writer/artist on Facebook or Twitter.  Most of what he produces are comics, but he does some short videos as well.  I’m a particular fan of “Shame Changer.”

 

 

DAY 14: On Meltdowns and “autism parent” pity-parties

Neurodivergent Rebel wrote a post about parents who post videos to social media of their autistic children having meltdowns.

If you have an autistic or otherwise neurodiverse child, please never EVER do this. These videos create a permanent record of a child without their consent, which could follow them through high school, higher education, and even job applications. Don’t presume your child will never have these opportunities. Don’t assume strangers won’t be able to find these videos, now or in ten years. Don’t pretend to raise “awareness” in order to gain pity for yourself.

Meltdowns are intense, harrowing experiences that make nearly everything impossible. It takes a long time to recover and even longer to rebuild trust in the people who triggered them or made them worse. Do not be those people. Do not tolerate it when your friends or relatives do this to their autistic children.  Do not do this to your autistic child. It doesn’t matter what your intentions are. Just don’t.

 

DAY 15: Simple, everyday things you can do to support your autistic friend/family member/coworker/acquaintance/etc

Credit to Autism Ambassador

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DAY 16: ‘The Visibly Invisible: Autistic People of Color’

I got it. You had to be tough to be black. There was no crying, no picky eating, none of this I can’t look you in the eye. Humor was a way of toughening yourself up, because the world was going to be tough for us, so if you don’t have a sense of humor now, you had better develop one.

Here’s an article about what it’s like to grow up and exist in our neurotypical society as an autistic woman of color.

Autism is written off not just as a condition affecting white people, but as a behavioral problem, a set of character flaws, stubbornness, and eccentricity bordering on mental illness.

TL;DR: it’s tougher than anyone who is NOT an autistic woman of color can understand.

I have told people  I have autism.  Too many times the reactions are either disbelief or fear.

“There is nothing wrong with you that God can’t fix,” is often the reaction.  Or “I know a little something about that, but you can look me in the eye, unlike my cousin’s child.”  Or worse there is fear.  I feel as if other black people are saying we have failed her, she is not one of us. She is how old and acting like that? Poor girl.

 

DAY 17: Autism and gender diversity

Autistic people are more likely to identify as transgender or non-binary than neurotypical people are. Trans/NB people are more likely to be autistic than cisgender people are. And yet, trans or NB autistic people have to deal with a laundry list of barriers as a result of being both neuro- and gender diverse. Here’s a post with a million references on the topic.

 

DAY 18: Book recs!

Another great way to support autistic people while learning to see the world from a different perspective is to read books by autistic authors.  Here’s a list to get you started.

I particularly recommend:

  •  So You Want to Be a Robot by A. Merc Rustad (Science Fiction/Fantasy, Short Stories)
  • Ninefox Gambit/The Raven Stratagem by Yoon Ha Lee (SF)
  • Queens of Geek by Jen Wilde (Young Adult)
  • On the Edge of Gone by Connie Duyvis (YA SF)
  • Emergence: Labeled Autistic by Temple Grandin (Memoir).

 

DAY 19: We need to talk about ABA

Hoo boy this was a long one.

Applied Behavior Analysis is a therapy technique that has been used to “treat” autism since around the 1970s, with some precursors in institutions in the 1960s. Basic tenets of the practice include interpreting behavior as a functional response to stimuli, teaching complex tasks step-by-step, and trying to “condition” preferred behaviors using systems of reward and punishment.

Ableism gets in the way of my access to the queer community and in turn makes me less proud to be part of that community. While I feel comfortable in autistic spaces, I do not always feel visible and affirmed as a queer, nonbinary person. I am always dividing myself into fractions in order to be socially accepted; I can never show up as my full queer, autistic self.

I do not exist as a fraction, and I cannot extricate my queerness from my autism. Queerness and autism are both marginalized identities that make navigating society difficult; thus, I crave companionship and solidarity in both communities. In order to do this, I need queer spaces that are more accessible to autistic people.

Chrysanthe Tan wrote a great article on the difficulties of finding accessible social spaces as a queer autistic person.  They included a list of great tips for queer people looking to make their spaces more autism-friendly.
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DAY 24: Processing…processing…
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“Processing” is what our brains do with new information.  When someone says something to us, we interpret the words, hold the concepts in our immediate memory, figure out the implications, decide which information needs to be stored for later, and identify an appropriate response.  This is processing. Most of the time, we do it all in a tiny fraction of a second. For autistic people, it can take a bit longer.
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In this article from the National Autistic Society in the UK, several autistic people and parents of autistic people describe what it’s like to interact with a neurotypical world despite processing delays.  They talk about what helps and what really, really doesn’t.  It’s a great read, but I know that I’m linking a million articles in this one post, so here are some highlights:
  • Don’t bombard an autistic person (or non-autistic person with processing difficulties) with tons of information at once. That can get frustrating and overwhelming.
  • Ask your question or present your information, then wait, even if the person doesn’t respond right away. Your instinct might tell you “they didn’t hear me – I should repeat myself” or “they didn’t understand – I should explain more.” This is likely not true, even counterproductive.  The best thing you can do is wait.
  • Don’t follow a question with another question if you haven’t gotten an answer to the first one. “How are you? How have you been? Did you do anything exciting recently? See any good movies?  How about [recent movie]? Did you see that one?” As an autistic person, I can promise that if you do this to me, by the time you reach question 3 or 4, I’m no longer even trying to process what you say.  I’m just planning my exit strategy.
  • Prompts or pressure to make decisions quickly can be counterproductive and stressful for people who have processing delays.  In extreme cases, they can cause a shutdown or meltdown. If you need a quick decision, better strategies for an autistic person are to reduce pressure and background noise while providing visual aid for choices. Informing the person of the need for an immediate decision at the time that you present the choices is not going to end well for anyone.
  • Be aware that an autistic person may have trouble hearing and understanding you in noisy environments.  Funny story: I used to think I had mild hearing loss, because it’s very difficult for me to understand people in spaces with lots of background noise. I was actually surprised when my hearing test fell within normal limits.  Then I read about and talked to other autistic people (see Day 22), many of whom had experienced the same thing!
  • Respect an autistic person’s need to protect themselves from loud noises. For some, noisy environments aren’t just annoying; they’re overwhelming.  Same with sudden, loud, or high-pitched sounds.  The person may need to leave the space or wear sound-suppressors due to auditory sensitivity.
  • Big, stressful, or emotional decisions may take days to process. Even non-autistic people sometimes need extra time to make big life decisions such as moving in with a significant other, accepting a job offer, or having children. For a person with processing difficulties, this may apply to any decision that carries weight.

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DAY 25: CDC report on the prevalence of autism

The Centers for Disease Control recently released a report on the prevalence of autism in children in certain areas of the U.S.  According to this report, 1 in 59 eight-year-old children in these communities has a diagnosis of autism (roughly 1.7%). This is an increase from reports conducted in previous years.

In The Autistic Self-Advocacy Network released a statement that addressed some limitations with the CDC’s methodology (examples: small sample size, limiting the survey to children) and positive changes in the data (for example: more girls and children of color are being identified than before).

Among the autistic community, people are mainly relieved that people who were not being diagnosed before are now having access to necessary supports at a younger age, attributing this increase to a better understanding of autism.

In other spaces, media outlets and certain organizations are using this information to promote fear of autism, mostly for the purpose of increased publicity.  I’m not linking to examples here.  They’re easy enough to find if you want to see them.

 

DAY 26: Autistic Women & Non-Binary Nework

The Autism Women’s Network (See Day 3) is officially changing its name to Autistic Women & Non-Binary Network. It’s always great to see advocacy organizations taking steps toward intersectionality and inclusion. Also, I admit, I’m kind of enjoying the trend where organizations that originally established themselves as “for women” redefine themselves as “for everyone except cis men.”

 

DAY 27: Follow Friday part 4. Ada Hoffmann.

Ada Hoffman is an autistic writer, poet, blogger, and book-reviewer who has a lot of fantastic things to say about the portrayal of autism in fiction. Her book recommendations have been extremely helpful to me, and I’m currently on the lookout for HER book, Monsters in My Mind. (No luck so far.) She’s also the one who wrote that mind-blowingly good article about emotional labor and autism. Check out her website and/or her Twitter account.

 

DAY 28: Favorite canon and headcanon autistic characters 
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“Canon” means something is explicitly stated in a book/comic/TV show/movie (e.g. “Commander Spock is half-human, half-vulcan”), and “headcanon” refers to something that fans interpret without actual confirmation from the creators, though there may be evidence to support it (e.g. “Commander Spock is in love with Captain Kirk”).
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The importance of headcanons for people with marginalized identities is an important topic for another time.
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I’ve made a list of my top 10 favorite autistic characters, using a mix of canon and headcanon.
  1. Abed Nadir from Community (TV show). He’s far and away my favorite of the bunch. Everyone else is listed in a sort of random order.
  2. Denise from On the Edge of Gone by Connie Duyvis (book)
  3. Dr. Julian Bashir from Star Trek: Deep Space Nine (TV show)
  4. Lunella Lafayette from Moon Girl and Devil Dinosaur (comics)
  5. Tesla from “How to Become a Robot in 12 Easy Steps” (short story)
  6. Lisbeth Salander from The Millennium Trilogy by Stieg Larsson (books)
  7. Alternate Astrid from Fringe (TV show)
  8. Keith from Voltron: Legendary Defender (cartoon)
  9. Maurice Moss from The IT Crowd (TV show)
  10. Carlos the Scientist from “Welcome to Night Vale” (podcast)

 

DAY 29: Special Interests

In my favorite writing class in college, we spent a day talking about obsessions, what they were and how they could be an asset to writing. College was really the first time I had the opportunity to see special interests as a source of strength and pride rather than shame. Now as a therapist, I use them with my students all the time, as motivators or topics or teaching tools. Special interests are strengths and we should play to them.  Here’s a whole article on special interests and autism.

 

DAY 30: For more information…

I’ve been throwing a lot of articles and information into the social media abyss this past month. I know that at least a few people found it interesting, and some learned a thing or two. I hope I’ve made a positive difference. Because there are still people out there who are afraid of people like me, who pity our families for “putting up” with us, call on abusive practices to force us to change who we are, and celebrate the prospect of an autism “cure.” And probably worse.

I’m leaving this one last article for the rest of you. It’s a page of links to MORE pages of links with information about autism, advocacy, and disability (even more pages of links can be found under “resources” on the red menu bar). I hope you enjoy it, or at least find it useful in some way.

 

Happy Autism Acceptance month, everyone.

‘Acceptance’ not ‘Awareness:’ Making sure advocacy isn’t ableist

(Image: rainbow infinity symbol representing neurodiversity; credit to Autistic UK)

Quick note: I am going to use identity-first language.  If that bothers you, read this article on the Autistic Self-Advocacy network.  Check out the links at the end if you need more convincing.

I’m sure many of you are aware that April has been designated “Autism Awareness Month,” with “World Autism Awareness Day” set to kick it off this year on Monday, April 2nd.  In just about two weeks, it will be time again for neurotypical (NT) people to show off just how aware and conscientious they are.  The trouble is, autistic people have been voicing serious complaints about this campaign and the organization who runs it for over a decade. Some NT people have listened, and some haven’t.  Still others remain blissfully unaware of the emotional (and sometimes physical) damage that Autism Speaks has inflicted on the very population it has been ostensibly trying to serve.

What many NT people seem to miss is that to most autistic people – such as myself – autism isn’t a disease or a disorder but a different way of perceiving and interacting with the world. From that perspective, autism is yet another misunderstood and marginalized identity in a world that continues to have a very difficult time accepting and accommodating diversity in any of its forms.

On February 20th of this year, a shelter-in-place alert went out at Norwalk High School after a student reported hearing someone slinging a gun in the bathroom.  Although the incident turned out to be a false alarm, school dismissed early that day, leaving the student body scared and confused.  Many students, as a result, took to bullying and harassing an autistic student named Owen Lynch, blaming him for the incident and spreading rumors that he had brought a gun to school.  He hadn’t.  No one had.

Read more about that incident and its fallout here and here.

Lynch happened to be in the bathroom when the alarm was raised, so it was understandable that the police would be overcautious in their response, especially so close on the heels of yet another mass school shooting in America. What is unacceptable, however, is the bullying that Lynch endured as a result of a situation that had nothing to do with him.

Every time a mass shooting happens (all too often these past several years), a small but increasingly loud group of people wonders if there is a connection between autism and people who commit mass murder.  (There isn’t.)  The conversation about guns in America is beyond the scope of this particular post, but the damage that this sort of speculation causes is unforgivable.  Autistic students are already more likely to be bullied than NT students are, and students like Owen Lynch are now facing a false but increasingly widespread belief which will only exacerbate the problem.

The problem these days doesn’t seem to be awareness, but acceptance. It would be difficult to find a person in the United States (and likely elsewhere) who hasn’t heard the term “autism” before, but that doesn’t stop people from perceiving it as a threat, tragedy, disease, or combination of the three.

Even the Schroeder article that I referenced above focuses primarily on the ways that autistic students’ deficits place them at an increased risk for bullying, failing to place responsibility on the NT population for bullying them. Time and time again, we focus on “fixing” autism, rather than accepting it as another form of diversity.  This reinforces the othering of autistic people, which exacerbates our marginalization and isolation, further increasing the likelihood of bullying and perpetuating a cycle it was ostensibly intended to correct.

The focus on the tragedy of autism is a component of the Impairment or Medical Model of disability, which  interprets a disabled person’s experience as the result of their disability and/or medical condition.  Deaf and hard-of-hearing people are disabled because they can’t hear. Wheelchair users are disabled because they can’t walk.  We help these people by “fixing” them, using hearing aids, cochlear implants, surgeries, physical therapy, etc.

In contrast, the Social Model of disability takes into account the way that society places disabled people at a disadvantage. Deaf and hard-of-hearing people have trouble communicating because most of the world uses sound-based language. Wheelchair users have mobility restrictions due to the near-ubiquitous presence of stairs and narrow doorways. The Social Model presents a major shift in how we view disability, placing responsibility on nondisabled people and the larger community instead of exclusively focusing on disabled people as being “broken.”

The Schroeder article spends most of its time discussing autism through the Impairment/Medical model, with very little focus on the ways that individual and systemic bias contribute to bullying. In contrast, a study in 2016 examined first impressions that NT people formed of autistic peers, given varied types and amounts of information. (In this study, ASD refers to ‘Autism Spectrum Disorder,’ and ‘TD’ means ‘typically developing.’) They noted:

observers’ first impressions of individuals with ASD engaging in real-world social behavior were found to be robustly less favorable than those of matched TD controls. These negative first impressions were consistent for both adults and children with ASD, for static as well as dynamic stimuli, for both brief (2–4 s) and longer (10 s) glimpses of social behavior, and did not change with repeated exposure. Further, because these impressions were associated with reduced intentions to socially engage by observers, they may reflect a previously under-recognized contributor to the reduced quantity and quality of social interaction experienced by individuals with ASD

Person-first language aside, this article uses the Social Model to examine the struggles that autistic people experience.  Rather than focusing on the individual deficits that may be causing autistic people to experience isolation, they study the reactions and intentions of NT peers. As a result, they’re able to identify factors that the NT community doesn’t seem to consider. For example, autistic people are largely viewed as having trouble with social interactions, but rarely is it acknowledged that we struggle in part because neurotpyical people avoid interacting with us.

Here’s another important takeaway from that study:

…negative first impressions of adults with ASD occurred only when audio and/or visual information was present, and not when the transcript of their speech content was evaluated (Study 1). This discrepancy suggests that social presentation style rather than the substantive content of social speech drove negative impression formation of individuals with ASD. Supporting this conclusion, a static image was sufficient for generating negative first impressions of those with ASD and including additional information, such as body movement or voice, did not worsen them further. In contrast, first impressions of TD controls improved with the addition of a visual information, suggesting that unlike the ASD group, visual cues helped rather than hurt the impressions they made on observers.

Negative first impressions that NT people form about autistic people have nothing to do with the content of what the latter actually say.  We now have empirical evidence that these judgments are insubstantive. Yet they persist, and this article is one of few to suggest that the fault does not lie with autistic people alone.  We aren’t disabled simply because we have trouble with social interaction, but also because the neurotypical world is conditioned to perceive us in a negative way when we don’t conform to their expectations.

When autistic people do “pass” as neurotypical, by suppressing autistic traits and intentionally adopting NT behavior, it usually requires a concerted effort with an intense emotional cost.  Ada Hoffman wrote a long post about the emotional labor that autistic people perform in order to appear NT in different situations. As she points out:

Any autistic person who “passes”, or tries to pass, is doing a ton of invisible emotional labour by definition. Even people who don’t pass usually do some of this labour so that they will bother people less.

Most of the material in social skills classes for autistic people is geared towards teaching us to do even more of this emotional labour in even more circumstances.

Hoffman also discusses the types of emotional labor that are particularly difficult or easy for autistic people to perform, as well as types of emotional labor that many autistics are performing constantly, which might not seem like work to a NT person.  In a particularly heartbreaking moment, she points out that “Many of the complaints that NTs have about autistic people boil down to the fact that autistic people are not doing enough emotional labour for them.”

So even though autistic people who attempt to pass as neurotypical are constantly performing more emotional labor than our NT peers, NT people still avoid us because our efforts are not enough to make them feel comfortable. Viewed from this angle, it starts to look as though the problem isn’t inherent to autism after all.

This article talks about the problems that autistic women face when they constantly attempt to pass (an habit also known as “masking” or “camouflaging”).

Some of the participants reported that they camouflage in order to connect with friends, find a good job, or meet a romantic partner. “Camouflaging well can land you a lucrative job,” Jennifer says. “It helps you get through social interaction without there being a spotlight on your behavior or a giant letter A on your chest.” Others said they camouflage to avoid punishment, to protect themselves from being shunned or attacked, or simply to be seen as “normal.”

This pattern can be very damaging to mental health.

Nearly everyone makes small adjustments to fit in better or conform to social norms, but camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.

On the other hand, being open and genuine about one’s autistic identity “comes with its own burdens, such as a stigmatising label and lower expectations for achievement.” Even further: “Many said they have played so many roles to disguise themselves through the years that they have lost sight of their true identity.”

Social interaction is meant to be reciprocal, so I’m not saying it’s unfair to ask autistic people to perform any emotional labor during social interactions.  What I’m saying is that the burden shouldn’t be entirely on us to change who we are in order to make NT people more comfortable.  I say this partly because social interactions tend to be disproportionately exhausting for autistic people, and partially because if NT people are perceiving autistic peers as awkward, unattractive, and unfavorable to talk or hang out with based on still photographs alone (see Study 1 of the Sasson article), then our attempts to camouflage can only take us so far.  At some point, it becomes unfair to view autism through the Impairment/Medical model and place the blame for social breakdown entirely on us.

Which brings me back to Autism Speaks.

For specific reasons why autistic people dislike Autism Speaks (often notated by autistic people as A$), look here, here, here, and here, for starters. Because A$ is the main organization behind “Autism Awareness Month,” “World Autism Awareness Day,” and “Light it up blue,” you can probably infer how the autistic community feels about these campaigns.

I’ll tell you anyway: they’re abelist, fear-mongering crap that make NT people feel good about themselves while simultaneously othering the very population they are pretending to help. But don’t take my word for it.

The Social Model of disability is crucial for understanding autistic people because it forces the conversation to include our input, allowing the autistic community to explain our own needs and perspectives.  As a variety of self-advocacy groups have stated: “Nothing about us without us.”  Meanwhile, A$ and Awareness Month have typically been about autistic people, but almost entirely without us.

The Medical/Impairment model results in trends like Applied Behavior Analysis, the popular but intensely problematic method of intervention which has been linked to increased symptoms of post-traumatic stress disorder in people who are exposed to it.  The Social Model brings us groups such as the Autistic Self Advocacy Network, the Autism Women’s Network, and communities on social media such as the #ActuallyAutistic and #AskingAutistics hashtags on Twitter.

Where the A$ campaigns are largely founded on the Impairment/Medical Model, the Social Model of autism provides the foundation for Autism Acceptance month, an alternative campaign started and run by autistic people.  “In a nutshell,” their description states, “Autism Acceptance Month is about treating autistic people with respect, listening to what we have to say about ourselves, and making us welcome in the world.”

In conclusion, as stated by one of the most well-written fictional characters I’ve ever seen on television (in a show that was, incidentally, written by an autistic person): “That’s what people don’t get, is they need to get me.”

Would you rather be accepting than aware? Would you rather be an advocate and ally than perpetuate this cycle of theatrically-well-meaning ableism? Here are some ideas:

  • Check out this list of ideas from the Autistic Self-Advocacy Network and Autism Acceptance Month
  • Read some of  these books by autistic authors.  Alternatively (or in addition), read some of these books by autistic authors.
  • Be extra nice to your autistic friend, family member, acquaintance, coworker, etc. We are about to be bombarded for 30 days straight with allegations that we are broken, tragic, burdensome, an epidemic, at fault for being bullied, and (relatively new this year) potentially responsible for America’s gun violence problem.  Ask the autistic person in your life what you can do to help them get through this month. Then (this is key) respect and honor their answer.
  • Share any or all of the above resources with the neurotypical people you know who like to perpetuate damaging stigmas about autism, well-intentioned as they may be.
  • Enjoy the visual component of activism? Instead of blue and puzzle pieces, go for red and more inclusive, autistic-created symbols such as the rainbow brain or infinity symbol. Searching for “neurodiversity” on websites such as etsy.com and redbubble.com will bring you to a variety of paraphernalia worth looking at, with the added benefit of supporting autistic artists!
  • Into social media? Check out the hashtags #AutismAcceptance #AskingAutistics #neurodiversity or #redinstead.  On Twitter, you can actually post questions under #AskingAutistics, and there is a large community of people who will answer you honestly.  (If you are not autistic, please do not use #ActuallyAutistic, as that tag is meant for autistic people.)

Happy Autism Acceptance month!

We need to talk about Thanksgiving

Well, white people need to talk about Thanksgiving.  I’m pretty sure American POC (especially Indigenous people) already know everything I’m about to say.

First, a description of the REAL origins of Thanksgiving, from an actual Indigenous person:

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Worry that Twitter is a unreliable source? Good. This is the time to question everything you read, especially on the internet.  Let me help.   Here is the link to the source that was used for this thread. Farther down that page is a list of sources to verify the information presented there.

Here are two more sources about the atrocities that white Americans inflicted on Indigenous people. The second one features a comprehensive list of supporting evidence at the bottom of the page.

Here is a New York Times article featuring perspectives on Thanksgiving from four Native American writers.

Here is an article by a Native American writer for NPR, in which she discusses Thanksgiving, the “National Day of Mourning,” and the federal holiday meant to honor Native Americans – which has been overshadowed by better-known “holiday” called Black Friday.

I’m fairly sure that many white Americans knew a lot of this already; more accurately, most of us probably know that we don’t know the true extent of the injustice done to Native Americans. We know white people did bad things. Most of us, if we’re being honest, likely know that we’re only aware of the tip of the iceberg.  We don’t want to know the rest.  It’s painful and uncomfortable. We don’t know what to do with the information.

It hurts to be honest with ourselves about the history of Thanksgiving. At best, we’re celebrating a holiday that appropriates Native American culture and ignores the struggles that Indigenous people have faced throughout history, injustices that continue to benefit white Americans to this day.  At worst, we’ve been blissfully observing a national holiday established to celebrate a massacre of people gathered to observe a holiday which we then claimed as our own before committing near-genocide, stealing land, and creating a system that continues to oppress Native Americans to this day.  Coming to terms with that is hard. The guilt alone can be overwhelming.

But it’s necessary, because Native Americans are still facing violence and oppression every day. In North Dakota, Native populations have a higher mortality rate and lower life expectancy than non-native peopleSuicide rates are significantly higher in American Indians and Alaskan Natives than in the total American populationMore Native Americans per million are killed by police than any other racial or ethnic group in America. Murders of Native Americans – committed by police officers and civilians alike – go unsolved and unpunished. Need individual names/stories?  Here are a few:

These are only a few.  These are the statistics and people I know about. A bit more research could probably drum up many more names, and that’s excluding the murders that are never reported.

This excludes everything that happened last year at Standing Rock. Research the Dakota Access Pipeline if you (somehow) don’t know.

It also excludes statistics and reports about killed and/or missing Native people in Canada. This Twitter thread provides more information.  (Full disclosure: I did not go through each link in this thread to verify it the way I have with previous links.  I’m busy removing the plank in my eye, but it seems like my northern brother has a pretty large speck in his.)

So.  Now what?

First, sit with your feelings of guilt, anger, and discomfort as long as you need to.  That’s important.  It’s easy – logistically and emotionally – for white people to brush off information about racial and ethnic oppression. It’s much harder to admit that we enable, benefit from, and even celebrate a system that has caused so much pain to so many people. Take time to process that. You’ll be much more useful once you do.

Then, prepare yourself for next year.

Here is an article on how to enjoy Thanksgiving without ignoring the truth about Native American history.

Talk to people about this. Be that person. Let it slide if/when people call you a “buzzkill,” because their “buzz” was atrociously problematic to begin with.

Have kids? Work with kids? Tell them the truth.  The myth of the First Thanksgiving is just that – a myth. Absorb its lessons about cooperation and gratitude while acknowledging that the real history is much worse, and we owe it to Native Americans to own that.

Here are a few things you can do in the 11+ months between now and Thanksgiving 2018:

Support Native American online stores.

Educate yourself on organizations that serve the Native American communities.  Donate to some, if you can. Research other ways you can help.

On Twitter? Follow Native American activists and groups such as Ruth Hopkins, Mari, Tonya Song, Dr Adrienne Keene, The Lakota Law project, Sacred Stone Camp, and so many more.  Not on Twitter?  Have a look through what these people have already posted. As always, the best way to help disenfranchised populations is to listen to what their members have been saying.

As always, feel free to comment with your own suggestions, or links to resources that I’ve missed.

Love is Love is Not an Excuse

Even when we aren’t marching with Tiki Torches and shouting “JEWS WILL NOT REPLACE US,” white people have a natural talent for racial bias.  So natural, in fact, that most of us regularly contribute to discrimination and erasure of people of color (POC) without realizing it.

The LGBTQ+ community is no exception.  In our struggle for rights and acceptance, we have an unfortunate tendency to ignore queer people of color (QPOC). Take, for example, the Stonewall riots: widely seen as a turning point in the struggle for gay rights in America (less so for trans* rights, unfortunately).  These riots, although instigated by trans women of color, launched a movement that benefitted white cisgender gay people disproportionately to the rest of the queer community. The 2015 movie about the Stonewall riots even created a fictional character just so the protagonist could be a cisgender white man instead of the real-life Marsha P. Johnson and/or Silvia Rivera.

We white people have been socialized, through a system of racial oppression, to see ourselves as the “default” and to center ourselves in situations that are not about us.  I am not saying that white queer people (WQP) do not face real difficulties with discrimination and violence, rather that QPOC experience a uniquely difficult struggle as a result of their intersecting marginalized identities.  See this, this, this, this, this, and this article for more information.

When the Pulse shooting happened last year, WQP yet again overlooked the experiences of QPOC as we processed our grief and rage and fear.  I own my contribution to this; I and many of my white queer friends initially failed to acknowledge that the majority of victims were people of color and that Hispanic/Latinx and black communities were hit harder than we were.  It took some reading, a few difficult conversations, and a lot of introspection for me to understand that by claiming the event as “the gay 9/11” and by centering my feelings of victimhood, I was effectively ignoring QPOC.

Which is why today, I want to talk about the comic Love is Love.

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For anyone who doesn’t know, Love is Love is a 144-page comic anthology co-published by DC Comics and IDW in December of 2016, in order to raise money for survivors, families, and victims of the Pulse Shooting. It features 1-2 page comics and spreads depicting the rage, grief, fear, and ultimately hope within the LGBTQ+ and ally communities in response to the event.

You might ask what this anthology has to do with QPOC erasure.  Look at the racial diversity represented on the cover! Unfortunately, the cover doesn’t mean much once you realize that white men are over-represented on the list of writers and artists, while people of color are grossly under-represented. In fact, despite 300+ creators contributing to the project, Love is Love features the work of exactly one black woman.  For perspective: two of the Pulse shooting’s 49 victims were black women; three were white men.

At an LGBTQ+ comics convention in Brooklyn, New York, I attended a panel called “Love is Love: One Year Later,” featuring a small group of contributors, half of whom were white men. Marc Andreyko, the project’s originator and main organizer, moderated the panel. He was understandably proud of the anthology’s success; although meant to be a one-time event, Love is Love has gone through several re-printings, distributed more than 100,000 copies, and will soon be released for publication in several foreign countries. Given that 100% of the initial proceeds went to people who were affected by the Pulse shootings – with proceeds of later publications slated to benefit LGBTQ+ charities such as The Trevor Project – this is undeniably a good thing.

Which is likely why Andreyko was so thrown off when the first two questions from the audience called him out on the lack of POC contributors.

The resulting discussion consisted of several familiar justifications, from Andreyko as well as contributor Phil Jimenez (who himself is a QPOC):

  • You’re wrong.
  • How do you know they were white?
  • No seriously, how do you know?
  • We used white male contributors because we wanted this project to sell.
  • We reached out to as many people as we knew.
  • Not everyone we contacted was able to submit something by the deadline.
  • We didn’t intentionally exclude people of color.

Andreyko did later walk back a few of these comments, acknowledging the problematic lack of diversity on the contributor list and pledging to do better in future anthologies.  (Side note: apparently a five-year anniversary edition is in the works, and Andreyko promises to include more QPOC creators.)

Not all of these excuses were completely false; the comic publishing industry has been consistently dominated by white men. By limiting the project to people who were well-known, easy for white men within the industry to reach, and/or able to temporarily drop what they were doing to create a contribution without being paid for it, the organizers unconsciously favored white men, whose privilege allows them to be over-represented among people who fit those criteria.

White people who are committed to racial equality need to understand that it is not enough to be “color-blind” or to ignore race as a factor. In projects such as Love is Love, white people in a position of privilege need to actively reach out to people of color, directly counteracting the systemic disadvantages that POC face. We so naturally default to white centrism that anything that does not actively work to include POC unintentionally shuts them out. (And that’s not even considering the issue of tokenism.)

The conversation was not going well until Tee Franklin, the only black woman on the panel (the entire project, in fact) spoke up.  (Jimenez appeared stunned to learn that Franklin was the only black woman contributor.)  Franklin described her experience as the “token black woman” in Love is Love.  She talked about queer black women and girls who had approached her to say that her contribution was the only place where they saw themselves represented. She pointed out that not only do databases of creators of color exist, so do anthologies of their work.  There’s even a database where people can search for queer creators of color.

Andreyko seemed increasingly receptive to what Franklin was saying, and by the end of the discussion he appeared willing to take action to include more queer creators of color in future projects.  My girlfriend and I were visiting Tee Franklin’s display after the panel, and Andreyko actually approached her while we were there.  He looked through one of the anthologies she had mentioned and eventually gave her his contact information so that they could work together on future POC-inclusive projects.  As someone outside the comic publishing industry, I can only hope that positive change comes from this.

A recurring theme at this convention was the importance of diversity, intersectionality, and representation in the media.  Representation matters, I heard time and time again. The Love is Love panel attempted to put that mantra into action, by calling out a project whose representation was lacking. I’m sad that it took almost a year for this issue to be brought to the organizers’ attention, and I’m equally sad that Tee Franklin is receiving backlash for speaking out about it. WQP (and allies) need to start doing better by QPOC, and this is just one of the many ways we can do it.

So what can you do?  Here are a few ideas:

  • Watch a video of the panel on Facebook. Show your support for Tee Franklin and other QPOC by liking or sharing it.
  • Educate yourself on the struggles that QPOC face. As I’ve said in previous entries, it’s long past time for white people to listen to marginalized voices.
  • Include QPOC in your conversations about LGBTQ+ issues.  Do you know how many trans women of color were killed in 2016? 2017? The past 48 hours? Do your friends and family know? Do not let another conversation about the Pulse shooting finish without someone mentioning the queer Latinx and black communities. Keep pushing when your white friends and families try to ignore or dismiss the issue. Be that person.
  • Show your support for Tee Franklin on Twitter and/or by pre-ordering her book Bingo Love. I’ve read the preview, and it looks fantastic!
  • Support queer creators of color by actively seeking out their projects.  I listed some ideas in a previous entry about prose books by authors of color, and there are plenty of other resources out there for finding books and comics by queer creators of color.
  • Let Marc Andreyko know that you hope future projects similar to Love is Love will be more inclusive of queer creators of color.
  • Buy and read Love is Love. Yes, it’s problematic, but it’s also a wonderful project for an excellent cause. We can acknowledge its racial bias while enjoying and supporting it for the good that it does.  Just make sure that when you discuss the book, you acknowledge the experience of QPOC and creators who were excluded. Do the work to make your corner of the LGBTQ+ movement inclusive, intersectional, and representative.