Sarah Kathryn is a cisgender autistic woman, blogger, and Speech-Language Pathologist (SLP). This week she shared her experience practicing as an SLP and the ableism she encounters, as well as ideas for helping hospitals become more accommodating to people on the spectrum.
How did you become interested in pursuing Speech Language Pathology?
I’ve always been passionate about language and communication. I talked early, I learned to read early, I loved creative writing as a kid (still do, actually), I find foreign languages fascinating, my undergraduate program was intensively focused on writing and oral presentations, and I became especially interested in augmentative and alternative communication (AAC) when I learned about it.
In my senior year of high school, I started doing support work for intellectually disabled people, and I continued doing that in various settings for several years. After college, I spent two years working in a Day Habilitation program for intellectually disabled adults. We had a Speech-Language Pathologist consult with us about how to help the people we serve improve their communication skills. She would come in every two weeks and advise us on things like AAC, sign language, the Means-Motives-Opportunities model, activity ideas, and other things like that. I ended up being the case manager for a lot of people who had difficulties with communication, so I worked pretty closely with her and ended up running most of the language/communication/AAC groups in the program. Through that I realized “I want to do what she’s doing,” so I applied to graduate programs in Speech-Language Pathology.
In a recent article, you described several ableist assumptions and behaviors that many SLPs have/perform when teaching pragmatic language and then offered some reflection questions for SLPs to consider during therapy. Is ableism prevalent among other SLPs you work with? What recommendations do you have for parents if they suspect their child’s SLP is basing therapy on ableist assumptions?
I am very grateful to be working at my current job with an SLP who is pro-neurodiversity. We have a lot of conversations about ableism in the profession and what we can do to alleviate it.
This, unfortunately, has not always been the case. Because ableism is so ingrained in the SLP professional culture (as well as in education and medical environments), a lot of people simply don’t recognize it. As clinicians we are taught to see any deviation from “the norm” as something bad that needs to be fixed, and any deviation that can’t be eliminated is seen as tragic or a burden. This ideology is reflected in books, research articles, therapy materials, clinical education, continuing professional development, and even conversations on social media. I’ve worked with or spoken to a lot of SLPs where the idea of neurodiversity is something genuinely new because it’s just not being considered yet.
In other cases, there are SLPs who have these ideas that are rooted in ableism, which they refuse to acknowledge when it’s pointed out to them. I’ve been in plenty of conversations where people double down on ableist ideas because for whatever reason they aren’t interested in acknowledging or changing their own intolerance.
I also want to point out that there are a growing number of SLPs out there – many who, like me, are autistic – who are fighting back against ableism in the profession. Change is happening, but it’s always slower than we would prefer.
It’s difficult to give one set of advice for all parents and caregivers, because every situation is so different. If your autistic child is getting speech or other forms of therapy, it’s a good idea to read up on autistic self-advocacy and the neurodiversity movement. Get to know the needs and wants of the autistic community, and look at how that aligns with the therapist’s goals and objectives. Look at how that aligns with what you know about your child. All therapy should be Person-Centered (meaning each plan is focused on the individual strength, wants, needs, and preferences of the person we’re working with), so that’s a good term to mention if you feel it isn’t happening for your child.
It’s also good to know what research is out there. SLPs are bound by evidence-based practice, which means that we base clinical decisions on available resources and clinical experience. In my blog, I’ve linked to studies such as the one showing that eye-contact is genuinely distressing for autistic people, or the one showing that stimming (or “restrictive and repetitive behaviors”) does not prevent children from meaningful engagement in play. So if your child’s therapist is trying to force them to make eye-contact or preventing/reducing their stimming behaviors, there is evidence against those practices. The more you have available to demonstrate the negative effects of ableism on the autistic community, the stronger your case will be and the less your SLP will be able to push back.
Unfortunately there are gaps in the research; for example there are a metric ton of articles showing that ABA is effective at increasing and decreasing certain behaviors, but there is abominably little research looking at the long-term social-emotional effects on ABA recipients. You can always bring this up as a concern even when the research hasn’t been conducted.
It’s always good to approach the therapy plan from a place of collaboration, especially because many therapists are genuinely unaware of the ableist assumptions behind their practice. Despite how frustrated I get with the SLP community, I do believe very strongly that the majority of us have our students’/clients’/patients’ best interests in mind. Plenty of therapists out there have changed their practice after learning about movements like Autism Acceptance and neurodiversity. Logically speaking, there are plenty more who simply haven’t had that opportunity yet.
That being said, remember that you always have the right to say no to certain objectives and request specific accommodations. You are not required to agree with anything that makes you uncomfortable. If you cannot get a therapist to see where you are coming from, you have the right to give a hard no to anything that you feel is ableist or harmful for your child.
In the same article, you discuss how SLPs pragmatic language approaches often directly teach masking. What needs to happen in order to move the profession away from masking or compliance training?
First, I want to acknowledge that masking is often necessary for autistic people for success in employment, social interaction, or even physical safety. The world is not very good at accepting people who are different. So, we aren’t necessarily doing autistic people a favor if we avoid teaching masking altogether. Instead, we can think of masking as a deliberate action that an autistic person can choose to take in order to be more successful in an intolerant world. When we do work with an autistic person on masking, we need to make sure they understand that: 1) their value as a person is not linked to their ability to mask successfully, 2) it is reasonable for them to choose not to mask, and 3) difficulties with non-autistic people who don’t understand and/or accept autism are not the autistic person’s fault. It’s important to be very clear about these things.
Beyond that, I think that the profession should start moving toward programs that center empowerment and validation. They need to start by saying, “your feelings and reactions are valid, and you are a good person worthy of respect and healthy relationships. Here’s how you can respect what other people need while making sure other people give you what YOU need.” A dose of “The things you are good at matter,” would do a world of good, because many of the people we serve don’t hear that often enough.
I recently learned about the Whole Child approach (http://www.wholechildeducation.org/about), which bases itself on these ideas. For example, boundaries are taught as a two-way street: you need to respect other people’s boundaries just like other people need to respect yours. This can apply even to simple touches or displays of affection. The program teaches people how to ask for consent, how to give/refuse consent, what to do if someone doesn’t consent, and what to do if someone ignores a lack of consent.
Social-Emotional Learning and the Second Steps program are good school-wide approaches (at least the portions that I’ve seen, which admittedly aren’t comprehensive) as well. My only beef so far with Second Steps is that they push Whole Body Listening without acknowledging that this doesn’t work for all children. There’s definitely work to do to include and accommodate neurodivergent children in these programs.
Wider education on neurodiversity is also necessary, especially for people in education and medical settings. If we can help neurotypical people understand the ways that neurodivergent people perceive the world, we could start to create environments that are more welcoming and inclusive of people of all neurotypes. This includes educating neurotypical children from a young age, to teach them to respect and include neurodivergent peers.
I would love to see ASHA take steps like adding “neurotype” to its list of identities protected under Cultural Competence, or deliberately including an openly neurodivergent person on the board of directors. These seem like small changes, but they have huge ramifications. That representation is very important for making sure that autistic and other neurodivergent voices are heard in spaces that influence our practice.
Has general public autism advocacy missed the mark in terms of advocating for things that autistics actually want (verses what NT’s think is “best” for them)? Explain.
Yes.
The root of the problem with public autism advocacy programs is that they ignore and exclude autistic people. Autistic voices are rarely if ever considered during the process of planning and implementing programs such as “Autism Awareness” and “Light it up Blue.” Then, when autistic advocates point out the problems with these campaigns, they are ignored or belittled by non-autistic people. As a result, we see a lot of misinformation and stigma about autism and practices that are counterproductive or even harmful to the autistic community.
A lot of public advocacy programs use the Medical Model of disability, which says that a person’s struggles are a direct result of their difference or impairment. These programs present autism as a tragic disease or disorder that places a huge burden on families and professionals, but can be overcome through intensive treatment. Autism is frequently compared to illnesses such as cancer, and the insistence on person-first language perpetuates the stigma that autism is a horrible thing that people need to work to overcome. Autism “treatments” focus on outward behavioral change with little to no examination of long-term social-emotional effects. Other research looks for causes and cures, even sometimes pushing disproven and potentially damaging ideas such as vaccination or bleach treatment.
Meanwhile, autistic people are asking for something completely different. Although there is disagreement in the community, a majority of autistic folks use the Social Model of disability, which sees a person’s struggles as a result of environments and communities that do not meet their needs. Autistic people generally want autism to be seen as a marginalized identity. (It should be noted that many autistic people who support neurodiversity do see autism as a disability, though some don’t.) Identity-first language is used to show that autism is a vital part of who we are. Autistics are asking for acceptance and understanding. We’re trying to help non-autistic people understand the ways that they make the world more difficult for autistic people, because everything is seen through a neurotypical lens. Some advocates are asking for more research into the social-emotional effects of ABA, or suicide rates in autistic people, which are disproportionately high among autistic people who mask all the time. These things are largely being ignored, either due to a general lack of awareness or deliberate attempts to ignore autistic people who are saying things non-autistics don’t want to hear.
Based on your personal hospital admission experiences, where is there room for improvement in the area of medical treatment for autistic patients? In other words, what are some of the conflicts you have experienced due to a medical professional’s lack of understanding of autism or of your specific needs?
This one is tricky for me to answer, because I have the privilege of being able to mask, even during a long hospital stay. This is something I choose to do out of the fear that my needs will be taken less seriously and/or I will be seen as less able to take care of myself, if people know I’m autistic. I do feel guilty about this sometimes. It’s also exhausting. Hospital stays are extra complicated for me already because I have a pretty complex medical history, and then on top of that I’m constantly doing all this careful work to pretend to be neurotypical.
I have a lot of trouble with bright fluorescent lights, which is rough because in a hospital or clinic, the choices are usually that or near-darkness (or full darkness if there are no windows). I have tinted glasses, which I can’t wear if I need to lie down on my side, or when certain imaging procedures are being done.
I also process and express pain and large emotions differently than other people do. I tend to internalize a lot, and then fall apart about little things, or meltdown or shut down when it gets too much for me. My auditory processing is somewhat slow, especially about weighty or complicated topics, so communication via writing will always be easier for me than an on-the-spot conversation. This results in miscommunication, or me forgetting to ask a question or state a concern I have, or people assuming I’m in less pain or discomfort than I’m actually in. But because most medical professionals don’t know I’m autistic (and would probably assume I’m not unless I deliberately showed them the notes where it’s written), it’s assumed that these problems are my fault. I’ve been accused of being dishonest about my level of pain or difficulty, because my outward presentation doesn’t look how non-autistic people think it should.
What advice do you have for remedying some of these issues? Do you have advice for autistics on how to communicate their needs to a doctor or a nurse?
I’ll be honest, I really don’t know. I think in general, the medical community could benefit from learning about autistic self-advocacy, autism acceptance, and neurodiversity. There are people out there who speak about sensory issues, communication difficulties, meltdowns/shutdowns, and other difficulties that are specific to neurodivergent patients in medical environments, and I think hospitals and clinics should listen to them and make changes to accommodate people’s needs. I haven’t found any specific strategies that work for me, other than finding medical professionals who I feel safe and comfortable with, which isn’t always easy or even possible.
Evaluate the autism acceptance climate in your region. What is improving (if anything)? What are the most critical areas needing attention?
I feel very lucky to be working for a school district that is moving toward the social model and autism acceptance. I’ve worked in other settings in this same region that have not even considered making that effort, and the difference is striking. Neurodivergent students are just happier in spaces where they are listened to and validated and accommodated. I think it’s about having enough people present who are willing to consider the needs of neurodiverse people in a respectful, person-centered way.
In public schools, I think more flexibility and understanding is needed for neurodiverse students. There is some variation, but generally public schools are very rigid environments with lots of rules, and people aren’t always willing to meet students where they are. This mindset of “I need to be the one in control at all times and they need to do everything I say just because I said it” is easy to adopt even without thinking about it, and even for me it’s a struggle sometimes not to fall into that.
People in education and other supportive environments need to stop thinking “this person is a burden on me because __” and start thinking, “I and the environment are burdens on this person because __.” There are resources out there on shifting the language you use to describe people, such as saying “passionate” instead of “obsessed/fixated” or “energetic” instead of “disruptive.” We need to move away from a compliance-based model, where everything is focused on making someone act exactly like their peers and always do as they’re told, and move toward environments that support people with a variety of needs, so everyone can learn in their own way.