Answering your questions about Autism
Thanks to so many of you for your kind and accepting responses to my essay last month about realizing that I'm Autistic at age 37! I can't begin to tell you what your reflections, stories, and feedback meant to me.
Some of you had follow up questions about particular words I used or how I see elements of Autism. First of all, thank you for asking! If you are wondering which terms to use around a disabled person, my understanding is that you should ask them! As long as you ask with genuine curiosity, it's not a rude question—it's a way to honor that person's identity and experience.
Here are my answers to those questions in case you wondered, too. These are my understandings and opinions based on the research I've done and my own experience, and I speak for myself, not all Autistic people. I also reserve the right to keep learning and change my perspective along the way.
Art by Sonny Jane of @livedexperienceeducator on Instagram
What's the difference between the words “neurodiversity” and “neurodivergent”?
Neurodiversity refers to the wide variety of ways that people's brains can work. There are many traits and conditions that fall under the umbrella of neurodiversity, not just Autism. Much like with other dimensions of diversity (racial, gender, sexuality, etc.), neurodiversity advocates assert that we all benefit from bringing together our variety of unique backgrounds and perspectives.
--> Use the term neurodiversity when talking about the overall issue of inclusion for a wide variety of neurotypes.
Neurodivergent refers to a person's brain that processes information differently to what is considered neurotypical.
--> Use the term neurodivergent when referring to a person or people. (A person can't be neurodiverse...they have a singular neurological system, not many!)
Is Autism a disability?
Yes, it is. Autism is a neurological developmental disability that can affect a person’s movement, senses, and activities. It falls outside the "norm" of the social dominant culture. The word “disability” has come to feel neutral to me. When I hear it, it equates in my mind to: “This person may need accommodations,” not “This person is broken.” It surely isn’t a neutral word for everyone, but I hope that someday it will be.
It’s been helpful to name that I have a disability, and that my husband does too (related to anxiety) so that we can honestly acknowledge and meet our individual needs in certain situations.
Do you prefer to be called an Autistic person, a person with Autism, or a person on the spectrum...?
There are different perspectives on how to identify a person with a disability. Some prefer person-first language ("I'm a person with Autism") because they don't want to be defined by their condition. Others prefer identity-first language (“I'm an Autistic person") because it recognizes that this condition is an important part of their identity. That's how I feel and the language that I use—I’m an Autistic person. I don't see Autism as a dysfunction that I wish could be cured. It is an active part of my identity.
Why do you capitalize Autism?
I've chosen to capitalize Autism because it refers to a community of people with their own identity and culture. When I was in college, I took a year of sign language and learned about Deaf culture—with its rich and unique history, communities, and customs. I see some similarities between the Deaf community and the Autistic community, as they are both disabled communities with their own histories and cultures. The Deaf community capitalizes "Deaf" in order to honor that culture—and I think the Autistic community deserves that honor as well.
Do you have Aspergers?
Not long ago, "high functioning" Autistics who did not have intellectual disabilities were diagnosed with Asperger Syndrome. Asperger Syndrome was named after Hans Asperger, who worked with the Nazis to mark differences between Autistic children during WWII. His decisions meant that some children were spared while others were sent to death camps.
To move away from this problematic and painful history of assigning different value to people’s lives based on ability, today all folks are diagnosed with Autism Spectrum Disorder. Some people who were diagnosed with Aspergers choose to keep using the term because it's one that has been an important part of their identity and one that they've journeyed with for some time. But the term Aspergers isn't generally used in new diagnoses.
Are you "high functioning"?
More and more, we're moving away from language that delineates "high functioning" from "low functioning." That is far too simplistic a way of looking at what it means to be Autistic—it places value on people based on their productivity and doesn't acknowledge the array of internal and external challenges that Autistic people face (even when they appear to be "high functioning"). The spectrum is not a line that ranges from "more Autistic" to "less Autistic"—instead, the spectrum refers to the wide variety and mix of traits and characteristics that present in each person.
Instead of a spectrum, let's imagine Autism as a soup. Each of us has different ingredients in our unique soup.
My soup is made up of:
Sensory processing differences. My system is wide open to take in sensory inputs. I listen deeply and pick up on subtle body language and energy shifts in a room. This level of receptivity means that my brain needs more time to process everything. It also means that I’m uniquely suited to be a coach and facilitator.
Deep interests. Just like the little boy transfixed by trains, I have deep interests—they just look a little different. I’ve given myself permission to enjoy my special interests fully. Right now they include: contemporary romance novels, pie-baking, the music of Ben Gibbard, and fountain pens. It‘s so satisfying to get to know a thing all the way around. In my work, I get to share my deep interests in career and leadership development tools in support of others.
Social navigation. When I'm with others, my brain is constantly going through the mental calculus of managing rules and interpersonal risks. I prefer 1:1 relationships to a crowd of people, because that’s just too overwhelming for me. Coaching is all about deep 1:1 and small group connections. Being an objective outsider is an advantage. It's the perfect place for me to be.
Language that you will more commonly hear today is "high support needs" and "low support needs." This puts the focus on accommodating for the person's needs rather than labeling their “shortcomings”.
What is "masking"?
Masking is when Autistic people camouflage or compensate for their differences in order to fit into a neurotypical world. Masking isn’t biological—it’s social. Until I learned that I'm Autistic, I had no idea that I was doing this—it was just a part of everyday life. It was something I felt I needed to do in order to make the people around me more comfortable and make myself stand out less. I’ve realized that masking is integral in how I show up everyday—and that realization is both scary and exhausting. (Who am I underneath all of this hiding?) I’m working through the process of unmasking: acknowledging my needs and limitations, honoring them, and living in a way that is more true to who I am.
Why did you decide to get a formal diagnosis?
At first, I didn't think I would. I learned something that really changed the way I think about disability and diagnoses in general: the medical model of disability vs. the social model of disability. This is really important, and I want to try to explain it well:
The medical model of disability says: This is your diagnosis—the name for the thing that describes what is wrong, abnormal, or needs to be cured to make this person whole and "normal."
The social model of disability says: This is who this person is, and they are whole; there is nothing wrong with this person as they are. Instead, the problem lies with our established social constructs that consider anything other than the norm (usually white, male, cisgender, heterosexual...) to be “other” and wrong.
Looking at Autism through the lens of the social model of disability, there is nothing wrong with me. I am understanding how my unique neurological system works, and the way that my system works is as neutral as having freckles or wearing glasses. I don't need a medical diagnosis because my Autism isn't something that needs to be cured; I do not need to be made whole. What I need is to understand how to take care of myself and have access to accommodations so that I can be at my best.
I came to understand that I'm Autistic through a process that is referred to as self-realization or self-determination. No doctor told me, "You're Autistic." I did my own research, read about it extensively, and talked about it with my therapist and doctor. I am sure that I belong in the Autistic community, and the Autistic community is welcoming to people who are self-realized.
I didn't think I would get a formal diagnosis. I actually didn't think I could get a formal diagnosis—the assessment tools were developed for young white boys, and aren't as fitting for an adult woman or people with identities that stray from that "norm." I also didn't think it would be covered by my insurance.
But my doctor encouraged me to look into it—she said that the assessment can give us some detailed information that could help me better understand my system. It turns out that it is covered by my insurance. And my doctor was able to refer me to a practice that took me as an adult woman (though I have to wait seven months for the appointment).
As I wait for that day to come, I have some worries:
I worry that they'll have me sit down in a tiny chair and ask me questions that are meant for children.
I worry that I'll need to educate the neuropsychologist about adult women and Autism; I don't know for sure that they will be well-versed, because that's not yet the standard of practice.
I worry that they'll tell me I'm not Autistic when I know that I am.
I worry that I've become so practiced at masking my Autistic traits after all these years that they won't even be able to tell who I really am.
But I'm staying open to the process as it comes (April). I am open to new information, but not counting on this assessment to tell me who I am. I already know.
A Further Resource
I still love author Katharine May's Autism Resource Page as a simple, accessible, and digestible page of some key terms and concepts for Autistic people and allies. https://katherine-may.co.uk/autism-resource-page
