We all start somewhere on our neurodiversity journeys and none of us are perfect. If I’d known I was actually autistic, I don’t think I’d be an SLP today. Before I entered grad school, a “communication expert with communication deficits” didn’t make sense to me. In this post, I open up about my own internalized ableism. And how confronting it drastically changed my life for the better.
Introduction
Neurodiversity competence is like cultural competence, it isn’t something you can master in an hour, a week, or even a year.
The more you learn about the neurodiversity movement, you’re going to realize that some things you’ve done, said, thought, or taught were actually harmful, contributed to trauma. Ableist without you ever realizing it.
You’re going to make some mistakes, and that’s going to be hard. But don’t let that stop or shy you away from neurodiversity work. If it were easy everyone would be doing it and trust me, even with “neurodiversity” being a buzzword right now, not everyone is.
I’m uncomfortable thinking about some of my past beliefs and actions, unintentional mistakes that I can’t undo. But I need to own them as part of my past. The more we learn, the better we can apply that knowledge and grow.
We are all on lifelong journeys to identify our personal biases and keep learning, growing our understanding, and evolving our practices as a result. I’m sharing insights I’ve learned over the years so we, as SLPs, can continue to increase our neurodiversity competence together.
Storytime
When I started a master’s program in speech-language pathology, I didn’t know I was autistic.
Introverted? – Yes.
Quirky? – Oh absolutely.
Social anxiety? – Almost crippling, but that SLP tenacity was still winning.
But autistic? Surely that couldn’t be accurate, I reassured myself. I had a semester course on autism in undergrad and okay, I related to the social pragmatic communication disorder characteristics and a handful of the autism ones, but everyone’s a little autistic, right?
(*Spoiler alert: no, no they are not.)
One of my greatest strengths when it came to school was my ability to hyperfocus – zone in so deep on a subject that the rest of the world faded away. And this self-discovery was no different.
In the graduate school clinic faced with my first autistic client, a young girl, I was terrified. I’ve never been the kind of person who handles uncertainty well, so to compensate, I was determined to consume as much content online as I could about how autism typically presents in females. If I prepared well enough, I could anticipate what to expect and how to respond.
Little did I know I’d be reading descriptions that sounded an awful lot like myself.
- Sensory issues – smells, sounds, textures, sensations
- Dyspraxia / gross motor difficulty
- Hyperfixation on interests
- Auditory processing deficits
- Difficulty making and keeping friends
- Not keeping up in group conversation
- Difficulty understanding sarcasm, humor
- Literal thinking
- Thinking in pictures
- Highly sensitive
- Social anxiety
- Repeating phrases
- Visuospatial difficulties
I didn’t want to believe it; I didn’t want to even consider that reality. I clung to any characteristic I could to refute the possibility. I’m highly verbal. I have empathy. I know how to be polite; I’m friendly, overly expressive. I don’t have trouble making eye contact. I have a good imagination. I don’t have repetitive behaviors. I don’t stim. I don’t have meltdowns over change. (Although I wouldn’t ask someone to testify that I liked change.)
Quickly my arguments began to unravel. Although I don’t struggle making eye contact now, I used to burst into uncontrollable laughter from the discomfort whenever people stared at me. I had an overcorrecting phase where I stared too intently at someone’s eyes that they’d break conversation from confusion, which only confused me in return because I thought well isn’t that what you’re supposed to do?
I played with my Barbies by selecting a theme to dress them in to have a “fashion show.” Did that fashion show involve pretending my Barbies were walking across a catwalk? Nope, I lined them up neatly across the carpet, satisfied. When my parents bought me a Barbie house, I didn’t know what to do with it except rearrange the furniture.
As I progressed to thinking about my parents and relatives, my family tree lit up like Christmas with red flags for autism. The few friends I’d managed over the years had one common denominator… I apparently didn’t need a diagnosis to seek out and find my people.
Autism and grief cycles
I’m ashamed to admit that I went through the stages of grief after my self-discovery. Shock and denial were first, and then I found myself mourning an aspirational life that would never be mine.
I cycled among depression, anger, bargaining, as if I were a parent reacting to the misnomer that their beautiful child was taken by the autism monster.*
*Think I’m exaggerating? Check out the “I am Autism” campaign of 2009 by Autism Speaks.
“I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.”
But there wasn’t any bargaining to do. Because autism is not an insidious monster taking children – I hadn’t gone anywhere.
I didn’t die and become autism; my brain has always been wired this autistic way.
“Grieving” over autism is far from a new concept. Jim Sinclair, an autistic adult and advocate, published an article titled “Don’t Mourn for Us” in 1993 and presented to parents, asking them not to grieve their autistic children.
“Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.”
He summarizes his points as: Autism is not an appendage; autism is not an impenetrable wall; autism is not death. His words are powerful and continue to stand relevant.
Most people today don’t intentionally think these things, but they may shape our underlying thought processes without our awareness.
Ableism, the real monster lurking in the shadows
I was grieving a brain, self, life that had never been mine as if having a typical brain were superior and suddenly, with this new label, I was doomed to be an inferior SLP, and inferior human. This is internalized ableism.
I had no idea the amount and degree of internalized ableism I possessed. I consider myself a highly empathetic, caring person. I didn’t think I discriminated or held negative perceptions of people with disabilities. I though disabled people were just as deserving as anyone else, in equity, opportunity, importance, and people without disabilities weren’t superior beings. I didn’t believe any of me held such harmful perceptions until it was me with the disability.
A wise mentor breaks the cycle
I broke down in front of my clinical supervisor because my entire perception of myself had changed. What was I doing, thinking I could do this job that wasn’t meant for someone like me? A socially anxious introvert who couldn’t make friends or keep up in conversations of three people or more. How could I teach pragmatics and social skills I didn’t even understand myself?
My supervisor focused on shifting my perspective from my deficits to my strengths. She told me she had observed multiple students working with this young autistic client, and she hadn’t seen someone connect so quickly and well as I had. She asked me to consider that perhaps my neurodivergence was exactly the thing that made me a good clinician.
I’m incredibly fortunate that my clinical supervisor was neurodivergent herself, proudly ADHD. With just one conversation, she planted the seed of a radically different view. My different brain helped me understand and connect with my neurodivergent students. Because I could relate to many of their challenges and points of view. My neurodivergence could perhaps be an asset to my work.
Letting go of the shame labels
I’ve been working to replace my preconceived notions about autism with ones that are more positive, healthy, truly accepting. Autism isn’t a superpower by any means, but it also isn’t a “tragedy” or something to fear, hate, mourn. Autism simply describes how my brain operates – differently. Not inferior.
Accepting my brain as autistic gave me one label to replace dozens of others I’d collected and internalized over the years.
Before autism, I was still labeled, my labels were just different. I was highly critical of myself. I never felt “good enough” so I’d push myself harder and harder. I held more internalized ableism than I’m comfortable admitting. It took listening to the perspective of a neurodivergent SLP to question my views.
And my life is so much better for it.
My mental health is better than it has ever been. I let myself stim. I accommodate my needs rather than criticize or shame them. I’ve been learning to accept my autistic brain as I am, not expecting myself to live up to neurotypical standards. I’m working with my brain, not against it.
All of our neurodivergent students deserve to be accepted and accommodated for the brains they were born with.
Next Steps
Neurodiversity is considered a social movement because we are asking for widespread societal change, challenging well-established schools of thought and current practices. Right now, the neurodiversity movement is gaining momentum, growing, from the hard work of neurodivergent individuals, advocates, the autistic and ADHD communities.
Perhaps together, we can build that confidence to speak up and be better advocates and therapists because of it. I feel like I’ve been learning so much and I know that I’ve just begun.
Each small step forward is an important, valuable step. Even if you don’t realize it, you have the power to make immeasurable impact on your neurodivergent clients.
I hope you’re willing to join me in reflecting on any internalized ableism you may hold. Don’t worry, you’re not doing it alone.
Comment below any steps you’re currently taking toward understanding neurodiversity and being a more neurodiversity-affirming clinician for your students and clients.