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.
I first learned about autism when my younger brother was diagnosed with Asperger’s Syndrome. He was in eighth grade at the time, and I was in high school. Growing up with an autistic sibling gave me some insight into the challenges of autism and the need for societal acceptance.
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 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 questiona
ble; 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 had a friend with an autistic son who told me that she was trying to stop his rocking behavior by taking his iPad away when he rocked. I asked her why she wanted to stop the behavior. He wasn’t hurting anyone. And I pointed out that the rocking might be a way to communicate his excitement, focus on his activity, keep calm and comfortable, or any number of other things. She couldn’t provide an answer about why she wanted him to stop rocking except that it was distracting. She thought she was being a good parent by “teaching him how to act,” but if she simply would have left the room, she wouldn’t have been distracted, and her son would have been happy, engaged, and productive.
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.
When I first started formally interviewing people for my book research and the beginnings of the learnfromautistics.com website, I gave people a lot of freedom to discuss what they wanted. I expected to learn specific therapies that helped or hurt them, thereby giving parents insights to efficiently direct their therapy regimens or whatever supports they were seeking. What was most surprising to me is that while therapy was discussed at times, it was never the sole focus.
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.
Anyone who works in advocacy as an ally of any marginalized group is always operating from the perspective of an outsider. What are some barriers you face or insecurities you have as an ally?
This is something I’m always conscious of. When I was first beginning autism advocacy work, I wanted to find a manual of everything I should be doing so I knew I wouldn’t offend anyone. But making mistakes was the best way to realize how I could shape my efforts to be more supportive and productive.
Some insecurities I have are in censorship within my role as an advocate. For example, I don’t like to do to much editing to my interviews. I want the autistic voice to be at the forefront of the conversation, not whatever message/perception is a part of my own agenda. But everyone makes mistakes, and many could use help augmenting their message. I sometimes err on the side of little editing because I don’t want to appear as if I am trying to speak for someone.
I have chosen to use my website to promote autistic voices, but I do have a few principles that guide who I select to interview or how I choose to “edit,” if it’s necessary:
- Listening to what autistics have to say is valuable.
- Embracing and teaching neurodiversity is a key strategy to improving the lives of many autistics.
- There are concrete ways society can help improve the lives of autistic individuals.
- Promoting acceptance and respecting the dignity of all people is beneficial to all of society.
I don’t do interviews with people who don’t agree with one of the above statements, but I still feel conflicted about this because I would like to be a servant to all people on the spectrum, even those who disagree with me (or others in the autistic community) about the best ways to help.
Additionally, there are a lot of different identity and language preferences among the autistic community. While most of the people (but not all) I interview prefer identity-first language, there are still many other discrepancies, such as avoiding reference to autism as a “spectrum” and instead using “constellation.”
When I first approach someone new, I want to communicate that I am sensitive to different ways of identifying, but sometimes this is difficult when there are so many different preferences.
Have you had to censor any autistic voices? What was that like?
Yes, one time I had an interviewee speak ill of someone in a high position of a well-known autism self-advocacy service organization. I didn’t feel comfortable using the person’s name, but I included the interviewee’s story and what she felt uncomfortable with.
I wanted the story to be instructive without calling into question any particular person’s character. I felt uncomfortable editing even this small part because the experience obviously troubled her and she felt passionately about it. But, in general, I feel like giving people the benefit of the doubt when it comes to advocacy is important. I think working together is important since our intentions are similar.
How do you find people to contribute to the website?
I typically find autistic advocates online and contact them to see if they are interested in interviews. I look for people who are already speaking or writing about autism since I know they are typically comfortable with being a public advocate.
Occasionally I have asked people I know who are not already public advocates. I also have people contact me through my website saying they are interested and some former interviewees will recommend others to me as well.
How do autistic people generally receive you when you reach out for interviews or to share their stories?
I’ve been overwhelmingly surprised by how positive people are and willing to participate! Occasionally people will express interest but are too busy to follow through, which is understandable. In the almost six years I’ve been reaching out regularly to the autistic community, I have only had one person turn me down for an interview. Most everyone I’ve reached out to is impressed with the tone of the learnfromautistics site and is willing to contribute when they have time.
I’ve recently become aware of anti-autism hate groups. Have you ever been attacked or criticized by NTs who feel that you are romanticizing autism?
Unfortunately, yes. I was originally conflicted about moderating comments on my website, but I’ve realized that this is necessary to avoid some hateful exchanges that are sometimes sent my way. I am completely open to a respectful dialogue of differences, but I can’t tolerate unreasonable, hateful attacks.
Thankfully these have been relatively few, but I’ve had one person assert that autism is a punishment by God for immorality and suggested that anyone who doesn’t want to get rid of autism will receive eternal damnation….so… I had to delete that one. But that’s an extreme example.
More often, I get criticism from other parents who suggest that the neurodiversity movement shouldn’t be speaking for more “severely affected” individuals and that teaching autism acceptance is dangerous because it deemphasizes the real struggles people face and threatens funding which might otherwise be more accessible from government and private organizations if we kept the focus on all that is bad about autism.
I typically stress that embracing neurodiversity has so many tremendous positive benefits for autistic development that condemning it is irresponsible. There’s got to be a happy medium.
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.