Self-advocacy for safety: Actionable steps for non-speakers
I am so, SO tired of seeing news articles of non-speaking children facing horrendous abuse and neglect. And I can't even describe how tired and, quite frankly, ANGRY I am at the quotes in these articles about how these victims "can't tell anyone" about their abuse/neglect because of their non-speaking status. Speech-language pathologists: Here's your call to change that.
NOTE: The use of “non-verbal” from quotes below has been replaced with the preferred term: “non-speaking.”
It seems like heartbreaking stories of abuse against non-speaking children, show up in the news way too often. These stories paint a stark reality: many children are unable to communicate their experiences of mistreatment.
As professionals in education and healthcare, it's our responsibility to equip these children with the tools to speak out against abuse and ensure their safety.
Take what happened in Littleton, Colorado, for example. A staff member was caught on video physically abusing a non-speaking autistic child on a school bus. And, as a SLP, there’s one phrase that shows up in these stories that punches me in the gut every time:
“My child is non-[speaking]; they are unable to tell anyone that they are being abused.”
What strikes me so much about this is how much of a failure it is for our field in general…to not highlight the importance of teaching children how to find and tell trusted adults that they are being mistreated and/or that they have witnessed abuse. I know I never even thought about teaching this when I first started out. And if I did think of it, I either:
Didn’t know where to start or
Just figured it was the job of somebody else to do (e.g., the child’s guardians, mental health professionals).
‘Cause the thing is: This is a very uncomfortable topic. It’s heartbreaking every time we think about it. And all that emotion makes it incredibly difficult to clinically plan and problem-solve.
But in thinking about this over the years, I’ve come to one conclusion:
In order for a child, any child, to be able to tell adults about mistreatment and to have even a slight chance of not being ignored, is to say it in such a clear, direct way that the meaning cannot be denied. And is this doubly (if not triply) true for children in special-education.
As speech pathologists and AAC specialists, we've got a unique role here. We need to come up with ways to teach non-speaking kids how to communicate about their bodies and feelings. By giving them clear phrases and making sure they understand them, we're giving them power to stand up for themselves. It's not just about teaching them to say, "ouch, that hurts" or "I don't like that." Those kinds of vague statements can be brushed off all too easily. We've got to give them the words to clearly say what's happening.
One of the things I think about with this too is the fact that for speaking children, they are provided a lot of models and asked a lot of questions from a fairly young age about their body and if they have a medical need: Does your tummy hurt? Does your head hurt? Did you get an ouchie? Where's the ouchie? …But how often do non-speakers receive those same prompts? I'm going to guess not that often. Because non-speakers usually are shown that their body is not theirs. It's for someone else to move around for them. And that it’s easier for them if they give in to authority figures in the room. And that people don't really care if they like it or not. And, guess what? They’re not wrong.
How often have you seen it, school SLPs? How often do you see people assuming that because somebody has been deemed to have cognitive impairments, we can dismiss their cries for help. It’s not just unethical. It is an atrocious violation of basic human rights.
We cannot afford to be so naive as to ignore the societal stigma around non-speakers not having the cognitive capacity, not being presumed competent enough, to understand these things and to be able to talk about them. Because without solid video evidence, like in the Littleton case, all too often these sort of situations get dismissed very easily from administrators. (And those of us who sometimes whistle blow get pushed out of the positions due to that.) And we cannot pretend that we will be able to “fix” widespread societal bias by just providing clear communication about mistreatment. However, that doesn't mean we shouldn't at least try. But this one particular issue for my fellow speech on this pathologist, particularly for anyone who works with AAC, we have to give them a way to tell people when they're in pain and when they're being harmed. And if we aren't going to teach them what to say, if we aren't going to be the ones to script out how to tell people in a clear way, if we aren't the ones to teach the meaning and if we are not the ones to program in these very specific phrases so that they can tell adults when they are being mistreated, who else is going to do it?
Resources for taking action:
I haven't really done a very deep dive on this topic yet, but I wanted to get the message out sooner rather than later. A bit of searching took me to this great list of books by Charis Books & More. The list includes children’s books and books teens that talk about bodily consent, bodily autonomy, abuse, bullying, and also healing from trauma. (Now, I haven’t read all of these books, so I can’t comment on the quality, but it seems a good place to start looking into books that address this issue.)
In the non-fiction realm, the Autism and Safety Toolkit from the Autistic Self Advocacy Network (ASAN) is an excellent document outlining what you need to know and how to tell somebody about either witnessing or experiencing mistreatment. So that would also be a lovely template to use when you're thinking of what kind of language these people need to learn. In particular, I think there needs to be some nuanced discussion around bodily autonomy for children who require caregiver support for certain daily activities like toileting, bathing, etc., as it seems (in my very preliminary searching) that most resources that talk about consent and private parts, etc., don’t consider how to address “appropriate touch for hygiene purposes” from a caregiver vs. inappropriate touching. (If anyone has any good resources for outlining these differences, I would love to link to it on my Resources page.)
I don't wanna see these articles ever again, but I’m not so naive as to think access to communication will actually make it go away. But one thing that I think can go away is seeing that phrase, “they can’t tell anyone.”
So this is a call-to-action. Program those phrases. Start teaching the meaning, start teaching them their body parts and how to tell people when they feel bad, when they're in pain, when they feel sick. Let's help them with getting their medical needs met! And let's help them be able to advocate for their own safety by making it very clear when an adult is treating them in an incredibly inappropriate, unethical, dangerous and illegal way.
NOTE: For any SLPs and/or caregivers who start to provide these necessary communication skills to prevent mistreatment, one thing to be aware of is that if you’re the one teaching them how to tell people this, you will likely become the first person they will tell when they are being mistreated. (Makes sense if you think about it, because how do you know who to trust when your primary experience with adults has been having them assume your requests and/or protests weren’t real? So, you might need to have a plan in place that includes: 1) who you're going to go to tell about this, 2) where you're going to go for resources to help, 3) and what measures you can take. And this can be a very difficult thing if you feel like you are not in a particularly safe work environment. Many, many people have been pushed out of jobs because of whistle-blowing about mistreatment at their workplace. (So we once again bump up against another large-scale, societal problem….) And I would love to conclude this paragraph with something hopeful and/or encouraging, but honestly, I can’t come up with anything. I guess just that I hope everyone will take the employment risk for the sake of the kids. But that’s much easier said than done if you’re not barely scraping by as it is…
Reframing Autistic Labels: Beyond Severity and Functioning
It all begins with an idea.
Ah. Social media. The dumpster-fire of our lives. Where the discourse around who’s is really autistic or ADHD is raging out of control:
“Oh, you think you have autism, do ya? Well, you’re not severe enough to have autism! A friend of mine has a coworker with a child who is profoundly autistic. They’re so low functioning they can’t even talk! That’s what autism REALLY is. You just want attention. You faker.”
Honestly, I’ve had an issue with the labels we use to talk about all the different needs neurodivergents face. This is particularly evident in autistic discourse and has gotten even more heated over the years. As more and more late-diagnosed, adult advocates show up online, more and more people start to debate gatekeep the term AUTISM and who really has the “right” to that term.
“Is it for seemingly “low support needs” people? Should it only be for the “severe-to-profound” autistics? Are late-diagnosed autistics burying the voices of “higher support needs” autistics? What about the non-speakers? Do the same advocacy messages still apply to them? ”
One of the core issues here, as I see it, is in how we categorize and label the incredibly diverse spectrum of neurodivergents — and how incorrect labels can all too easily derail discussions about societal barriers . I think I might have come up with a solution to help.
You might have heard terms like "high-functioning" or "low-functioning" used a lot. These are NOT preferred labels. They can be pretty dehumanizing. Imagine being told you’re "low-functioning” as a human – not a great feeling, right? And as a speech-language pathologist in the schools, all too often I would hear staff talking about how “low” a student was when what they were really saying was the student was non-speaking.
The reason for this disability stigma and is something called the “spread effect” — where people assume one aspect of a person’s disability impacts the whole person. It is biased on dangerously discriminatory and blatantly erroneous assumptions.
So, instead of relying on these labels, the current best-practice is to focus on the type of support the neurodivergent needs. I think this is great when we’re talking about individuals! It’s super important for education teams and service providers to know if someone needs physical supports for ambulation or if they have a cochlear implant for hearing, etc.
But here's the thing – a lot of people have adopted this to talk about the amount of support groups of neurodivergents need. And I’ll give you one guess as to who someone’s talking about when they say “high support needs.”
Yup. Non-speakers again. Same stigma. Same bias. Same dehumanization. Ugh.
As I see it, the issue is we’re trying to apply terms intended to indicate individualized care to groups of people and the barriers to support that they face. And when you’re talking about a HUGE spectrum of highly diverse people, individualized terms will never apply well to a large group. However, for the sake of advocacy for systemic change and even for research into best practices, categorization by groups does matter.
So, here’s my proposal: Let's shift the conversation to focus on the social barriers that neurodivergents face. To do this, I think it comes down to two main categories based on disability type: apparent or non-apparent disabilities.
NOTE: It's important to remember that these categories aren't set in stone. They can change depending on all sorts of factors like age, different environments (noisy vs quiet), and health status changes.
Apparent neurodivergents have one or more “obvious” disabilities.
They might have muscle impairments, significant sensory needs, selective mutism, co-morbid severe-to-profound hearing loss, etc. People know they’re disabled from looking or hearing them, and so they’re immediately treated differently. Due to this, they’re not really given the option to mask socially — they’re just stigmatized immediately: Socially isolated from their peers, denied access to supports (i.e., not presumed competent), and have overtly costly medical support needs that aren’t always met by the system. Additionally, their parents/guardians/family caregivers are grossly under supported and are in desperate need of: More time off from caregiving duties to actually enjoy their time with their family member, waaayyyyy more access to free mental health support and more ethical answers to “what happens to them if I’m not around?”
Non-apparent neurodivergents do not have “obvious” disabilities.
Most late-diagnosed adults fit into this category as children — with the exception of BIPOC and women who are often misdiagnosed or just missed altogether. They could have significant mental health issues, learning disabilities, auditory processing issues, etc., but not any obvious visual and/or auditory “tell.” When other people meet them, they think “this person is like me.” Due to that, they are initially accepted by friends, teachers, etc., but then experience social rejection and isolation. This results in them learning to mask their differences to try to be safe from rejection. However, masking doesn’t usually work perfectly, so they still experience bullying/teasing from both peers and adults and they have their disability denied over and over, usually with the accompanying shame of “you’re just lazy” or “you’re too sensitive.”
Ultimately, let's stop focusing on what we think people can't do and start focusing on what the system needs to do.
