In the world of autism advocacy, it is rarely the autistic voices which are pioneered in the mainstream. Neurotypical advocates use their voice and their privilege to speak on behalf of, or in place of, the autistic community.
While these efforts are often well-intentioned, they are contributing to the continuation of stereotypes that autistic people are incapable of speaking for themselves. Even if the advocacy is rooted in the heart of a neurotypical mother whose child is on the spectrum, neglecting to amplify the voices of authentically autistic people creates barriers to empowering her child(ren) by reinforcing biases about the incapacity of autistic people to speak for themselves. This model of autism-as-a-mascot for neurotypical mothers has been a major source of contention within the insider autistic community.
Even in medicine and behavioral science, the information available about autism and what it means to be autistic is conceived and (mis)understood through neurotypical perception and models of normalcy.
But, there are a few who use their talents, resources, and privilege to bring autistic voices to the table and insist that neurodiverse people be included in education and decision-making which directly affects the lives and livelihood of autistics.
One such dedicated ally is Jenna Gensic, founder of LearnFromAutistics.com, a website which provides parents and caregivers with resources and educational material written and informed by #actuallyautistic voices.
I first became of aware of Jenna when she contacted me after reading an article I had written for PsychCentral. She wanted to interview me about diversity, employment, and function labels for publication on her website. In turn, I asked her if she’d be willing to contribute her knowledge and experience as an ally.
Below is that interview…
What prompted you to start learnfromautistics.com?
I started this website in the process of conducting research for a book I was working on. I was surprised at what I had been learning as I talked with adult autistics, and figured other parents could benefit from what I was learning as well.
When I first started talking to people on the spectrum, I was hoping to find some kind of “cheat sheet” of what to say or what not to say to autistic people. But ultimately I realized that regular discussions with autistic individuals were my best source of information. I learned new ways to support the autistic community, and this process unveiled my ableism so I could address it.
This website started as a way to share what I was learning from the autistic community with other neurotypical parents and caregivers. I’ve been pleasantly surprised with the willingness most people have to share their stories if it can benefit others. I’m honored to serve as a platform to support autistic voices in this way.
When my first son was born prematurely (at 1lb, 12oz), and later diagnosed with autism, I was motivated to continue learning about autism in order to provide him with the best opportunities to learn, grow, and achieve his full human potential. After reaching out to medical professionals, therapists and other families with autistic children, I still felt unsatisfied with this “expert” advice.
I began filling this void by seeking out advice from autistic individuals themselves and quickly realized this was where I should have began. I documented my initial pursuit of this knowledge in a book that will be published early next year. I’ve continued to regularly reach out to the autistic community, and, with permission, publish their insights on my website.
What are mistakes you feel that NTs (neurotypicals) make when they begin advocacy? What advice do you have for NTs about being an ally?
So many! This is something I eventually want to write a book about. I’m working on collecting research about advocacy from the autistic community now.
Advocacy is especially interesting to me because there are so many people who not only are unaware that their efforts aren’t helping, but they’d probably feel terrible that they may be causing additional harm.
There are definitely fringe advocates whose motives and genuine respect for autistics are questionable; however, I really believe most advocates want to do the right thing and be helpful. If they were given a nudge to put them more on course, what tremendous benefit this could bring to the autistic community! So that’s what I hope to help with.
I think the biggest mistake NTs make when they first begin advocacy (and one I certainly made) is to assume that the best way to help is to do whatever you can to help them navigate society as an NT would. This might include encouraging an autistic to act NT (or forcing hours of therapy to achieve this end).
It also includes the assumption that autistic people are not happy with who they are and how they experience the world, so they must need an NT to help them learn to fix this. Or believing autistics need neurotypicals to help them advocate for themselves or to guide advocacy efforts.
NTs are NOT true experts on the autistic condition, no matter how much they study it from afar.
Similarly, I think many NT advocates need to reframe their perceptions on communication and social integration. I cringe to admit this, but I think it’s instructive, so I’ll share an example here. I remember several years ago when I was interviewing a college student on the spectrum, and I asked, “Are you constantly aware of your autism or do you feel socially integrated?”
The interviewee rightfully put me in my place, explaining “Why can’t I be both?” This is an important part of acceptance. NTs must stop assuming that autism always exists apart from positive socialization. If NTs were more accepting of autistic behavior, this might help a bit with the anxiety that accompanies social situations.
NTs can’t assume autistics need support to get to an NT standard and that this is the best way to help. We must adjust our own perceptions and behavior and take a serious inventory of whatever we are trying to “correct.”
I think the best thing NTs can do before starting any advocacy work is to talk to autistic people. Find out exactly what they want and don’t want. Learn about who you’re advocating for and don’t assume you understand everything they need/want. Sure discrepancies will arise, but I guarantee you’ll learn enough commonalities to get you started. And you’ll save yourself from making a few inevitable mistakes.
It was a humbling experience to realize that I couldn’t call myself an ally. Autistic people can name their allies, but NT people can’t call themselves allies. We can strive to be allies with hard work and hope we are doing the right things to earn the title, but it isn’t ours to claim.
I think if NTs understand this before starting any advocacy efforts, this will lead them to lay a good foundation of learning from the autistic community before they begin their own campaigns. If we really want to advocate for individuals on the spectrum, we must learn to be servants to the autistic community, not leaders.
Were there moments when working with autistic people when something profoundly moved you, inspired you, or caused you to see something in a new light?
One example of this was the social integration interview question I mentioned in the previous question. Another eye-opening experience(s) was hearing people on the spectrum talk about the social/medical models of disability. I was already familiar with these terms, but listening to autistic people talk about how this personally affected them was important for me.
It’s one thing to read about disability models in a book, but it’s another to hear someone talk about how it affects their lives. Hearing someone tell me that it wasn’t autism that caused them problems, but it was the lack of society accepting autism that was the problem–this was a turning point for me. It puts an emphasis on NTs that we aren’t used to having. It gives us responsibility (beyond whatever walk we want to sign up for or bumper sticker we put on our vans).
NTs must change to make a difference.
There were so many other ways that parents could help their children develop confidence and achieve success. So many people talked about acceptance and developing a positive autistic identity. This is often overlooked in the pursuit of therapy, but I’ve learned that it is most important.
More about Jenna:
Jenna Gensic is a freelance writer and disability advocate from northern Indiana. She has four children; her oldest is diagnosed with cerebral palsy and autism. Jenna has a BA in English and an MA in English writing; she taught high school English before making the decision to work from home and raise her young children. She manages the Learn from Autistics website, and writes and speaks about parenting issues related to prematurity, cerebral palsy, and autism.