Dear Jenny, about that letter….
Time is changing, but did we change?
In 2015, I wrote an open letter from my future self of 2025 to the me of 2015. This letter situated foundational change events that would mean that our world was shifting into a neurodivergent-affirming place. It’s not surprising, but none of the changes that I’d imagined to be true have occurred.
It’s been a long road towards pushing change. The only thing that is still true that you wrote is “You still love your job just as much as the year you started. Change is coming. Be part of it!” Every other marker of change has sadly not adjusted in substantive ways.
But you have grown. It’s all clear when you read your own words. Part of the journey from 2015 to now has been one of examining my own internalized ableism and reaching into the corners of my mind and challenging myself to unpack assumptions. Dismantling ableism can only occur if we are willing to internally reflect and shift. This is your journey now. You didn’t even have all these words in 2015.
I’m bolder now. My 2015 self knew that individualized treatment choices needed to occur and that these must include humanistic therapy. Yet, my less bold version added ABA to the list. At the time, adding other therapy models like RDI to treatment choices where the dominant choice was only ABA was progressive – but not nearly enough. This past self was too scared to affirm in text that ABA was medical ableism. Jenny of 2015 knew this in her heart, but with the keyboard was too scared to make this bold assertion.
We’re Still Asking Autistic People To Not Be Autistic
Today’s Jenny can affirm, ABA is coercive and on the wrong side of history. It doesn’t really matter if it’s ‘natural’ or that ABA has changed. The fundamental underpinnings are still aligned with changing autistic people to be less autistic to serve the neuro-majority. This is not right.
In fact, I have come to say often enough that “The whales got it first.” Years ago, because of social activism and collective loud voices, Sea World adjusted the treatment of their whales used in their shows. The current practices of ABA were used with the whales and were unthinkable. The trainers would reward the whales when they performed identified skills. With these behavioral demands, the whales showed aggression, depression, increased anxiety and non-whale-like behavior.
This is exactly what is occurring with autistic people within ABA. The demands to act non-autistic, to mask autistic traits, lead to depression, anxiety, and behaviors consistent with aggression. The whales were unhappy and our voices were loud – “This isn’t right!” A decade later, autistic people have not been afforded this community outcry for these archaic and trauma-inducing interventions. In fact, it’s even worse than not listening to the voices of autistic people that have been speaking against these practices – so many medical professionals have not even heard this message.
It’s Time for Change
It’s time for that to change. When I wrote that letter almost 10 years ago, I knew change was slow. This time, I don’t think we have 10 years to finally listen. This needs to change now that we examine and demand change for medical and education practices that are discriminatory and harmful. If we don’t change this, people don’t survive. It’s that important.
Oftentimes, proponents claim that statements such as these mean that I am advocating against autistic people receiving any supports and that they need ABA therapy. This is not what I’m saying. This technique is used to disrupt the conversation.
Challenging medical and education ableism does not mean providing no supports.
It means committing to the practice of neurodivergent-affirming care. It means considering every part of how we show up as healthcare providers and educators and asking ourselves, “Am I doing right by this person?” It’s more than that, it’s going further to saying, “How do I know I am?” It’s pushing oneself to shift and questioning each answer with “Why do I believe this or where did this belief come from?”
We can even be really clear and say to ourselves, “Is this ableist?” It allows for us to demand within ourselves, “Don’t be an ableist.” We must demand that of ourselves. This is the only way that we can ensure that we are practicing with the integrity and dignity that we should be required to provide as medical and educational professionals. Demand in yourself right now, “Don’t be an ableist.”
For me, the journey of challenging internal ableism is continuous. I used to hold a limiting belief that my version and definition of friendship was what friendship really is. What I discovered is that my definition of friendship and how I express that in my own life works for me. My definition and many neurotypical definitions of friendship are not the exclusive or correct way.
For me, I used to overvalue face-to-face connection, thinking that IRL friendships were superior to relationships that develop in online spaces such as Discord. I used to consider frequency as a metric for the strength of a friendship. Just a few years ago, I might have encouraged an autistic client of mine to reach out more frequently or meet up in person. Those beliefs about friendships and how they were represented in my therapeutic interventions were ableist.
Now, I know that Discord friends are real friends. Now I know that social contact numbers do not mean depth or meaning. Within this, I learned that it’s not just the really glaringly obvious things to examine but rather each of our thoughts and how it shapes our actions within autistic treatment space.
I find it exciting to really dig and dig while I discover something within me that may create unintentional barriers. I also have learned that having transparent and ongoing conversations with everyone in my life is an absolutely essential part of challenging ableism within each of us. This could feel uncomfortable at first, but rather than have a 10-year plan like my letter, this starts today. Start talking about ableism when you hear it in yourself and see it in others. Challenge it. Give language to it, “I feel like that might be ableist.” Let’s get more comfortable with these conversations and less comfortable with the covert and overt ableism that perpetuates the educational and medical community. Let’s make sure that every person knows what this word ableism means and that most people care to make personal changes.
Rather than laboriously go through each point of change that didn’t occur in diagnostics, housing, employment, healthcare, schools, and in our hearts; I’d rather just get down to what needs to happen. We need to create change every single day.
Choose to change. It starts with you.
In the beginning, I thought it was simple.
In the now, I know it is.
In the future, I hope we choose it.
Jenny