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.

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Being an Autistic SLP

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In short: I did my job.

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

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

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

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

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

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

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

Yet, there’s always that one person.

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

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

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

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

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

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

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

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

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

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

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

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