All's Fair in Love and Neurodiversity
Who's afraid of little old Glee? Well, you shouldn't be—stream it on Hulu! It has great neurodiverse representation!!
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My thought process throughout writing this week’s piece has been interesting to reflect on. For one thing, I’m a month behind my book club and two years behind Reese Witherspoon’s—by which I mean to say I am only now reading Sara Novic’s True Biz. It is a novel set in a Deaf school that is both delightfully educational and unflinchingly honest in its discussions of disabilities and how our society approaches them.
The combo meal of being 20% of the way through this book, reading through my guest’s responses today, and experiencing a handful of recent interactions that have revealed to me how frankly ableist my world can be has made me all the more excited for this piece. I think there’s something to be said for having conversations that help us recognize our shortcomings, and this is one of them: there are so many ways we can make everyday life more accommodating for neurodiverse individuals if only we just asked.
This week, I’m joined by Lauren Madden to talk about how she knew she wanted to work with neurodiverse individuals, some misconceptions that need to be immediately dispelled, and small steps we can all take to help make our daily lives more neuro-affirming for everyone.
Lauren is first and foremost a cat mom, and then she also is a Director of Adaptive Programming with a passion for neurodivergent inclusion! She moved to New York from the Bay Area 2.5 years ago and has yet to look back (except in the winter when she thinks about moving back everyday).
Lauren gets along best with kids and animals, but currently works primarily alongside adults as that is what capitalism requires. Gotta pay the rent!
Portrait of the Girlboss as a Kind and Caring Young Woman
I wanted to kick off today’s piece by talking about what led Lauren, as a neurotypical person, to want to focus her education and advocacy on neurodiversity and neurodivergence…so I quite literally asked:
Emily: What led you to want to focus your education and advocacy on neurodiversity and neurodivergence?
Lauren: When I was in high school, I volunteered for a program called Special Needs Arts Program (SNAP) and served as a one-to-one for a girl with Down syndrome. I was 14 years old and that was the first time that I had legitimate proximity to intellectually and developmentally disabled peers, younger folks, and older teens.
I absolutely fell in love with Alessandra and her family and would talk with them about her experiences in a public mainstream school. They highlighted the inclusive PE, lunch, and recess times as an opportunity for Alessandra to interact with her neurotypical peers. I remember her mom would talk about being stopped by peers and teachers and adults—all of these people from Alessandra‘s life who loved her—and the impact of those positive moments of inclusion prompted me to look into that further.
In college, I studied education and psychology and I remember I went to a disability symposium during my senior year in college. That was the first time that I really learned what inclusion was, and I knew that that was what I was going to do for the rest of my life.
Emily: What are some of the most important lessons you’ve learned from this line of work and research?
Lauren: Honestly, the most important thing I have learned is to use my position as a neurotypical professional in this field to highlight and amplify autistic and neurodivergent voices as opposed to trying to speak for anyone. I think I have a unique position to speak to other neurotypical people and guide them to think about autistic folks and neurodivergent folks and what they are asking from us.
Frankly, we live in a society that only caters to the neurotypical perspective and my goal is to provide awareness and point neurotypical people toward neuro-affirming mindsets and behaviors. For me, this looks like following a ton of neurodivergent creators on Instagram and TikTok, and re-sharing educational posts on my own platform.
I am also in a position where I get to adjust and modify existing programming and special events to create a sensory-safe space for neurodivergent individuals. What I have learned is how important it is to push for inclusive and sensory-friendly spaces. I have also learned that the role I can and should take is to push the neurotypical boundaries and advocate for more universally designed inclusive spaces for people of all abilities.
Before we go any further, I wanted to pause here and define as best as possible the difference between neurotypical and neurodivergent. According to Medical News Today,1
The word “neurotypical” refers to people who have brains that function in a similar way to most of their peers. Individuals who are neurotypical develop skills, such as social or organizational skills, at around the same rate as others their age. They can also tolerate change, disruption in routines, and distractions without too much difficulty.
In contrast, people who consider themselves neurodivergent have brains that function differently. They may have a diagnosis such as ASD (austism spectrum disorder), ADHD, dyslexia, or Tourette’s syndrome. Neurodivergence comes in many forms, and they affect people with these diagnoses differently.
The concept of neurodiversity includes all of these variations, framing none of them as better or worse than the other. This comes from the idea that diverse minds are just as much a part of humanity as other types of diversity, such as gender and sexuality.
It can feel a little nebulous to talk about neurodiversity because, at least from my perspective, much of what I was taught about neurodivergence wasn’t necessarily accurate. More to it, many neurological conditions are invisible disabilities that go underdiagnosed, so it can be hard to visualize the full spectrum of neurodiversity.
Even still, not all of us “are a little ADHD” or all “have OCD.” We don’t all know what it’s like to be neurodivergent. There are still things that neurotypical people need to be more sensitive to when working or communicating with those who do have brains that function differently from theirs, particularly with children who might not have the language or awareness to adequately explain these gaps.
With that said, I wanted to ask Lauren:
Emily: As a neurotypical person, what was the number one thing you have to remind yourself of when working with neurodiverse kids?
Lauren: The number one thing I have to remember when working with neurodiverse and neurodivergent kids is to push back against my own inner norms of society—things like expecting eye contact, sitting still while listening, or following rules. These are all things that we expect as adults when working with kids and I constantly remind myself and others around me that it’s good to question why we expect those things just as it’s okay for kids to show up in different ways.
Recently, I went to a conference that framed this idea as adults working with youth are raising brains. I love that framework because kids' brains are constantly growing and molding and being shaped by the people around them, and working with kids is a big job. Ultimately, we’re the ones that are shaping the way kids see the world, and being aware of neurodiversity and allowing kids to be their authentic selves, whatever that means, is part of the role of working with youth.
Emily: How has your work with neurodiversity informed your life? Similarly, how has your life informed your work and advocacy?
Lauren: My life has completely changed from the time that I was 14 and working with Alessandra. Honestly, I think it makes me more creative. I am the Director of Adaptive Programming at Asphalt Green, which is a new position, and I’m constantly thinking of how we can implement universal support and modifications to benefit everyone as opposed to shaping neurodivergent people to fit into the neurotypical society mold.
My interactions and connections with neurodivergent people have completely informed my life, both in better accepting myself as a human on this earth, and being aware of the ever-changing needs of others. It has also made me look at the world and the physical spaces we enter through a whole new lens—I noticed things like when the automatic door buttons are broken, or when only a portion of subway stations are physically accessible.
The feeling of exclusion is devastating, one that I am prone to feeling in social situations as a highly sensitive person. I have made it somewhat of my personal mission to decrease exclusion for others where I can. This has meant working in the field of inclusion and learning about the importance of neuro-affirming practices and spaces.
While I wish we could focus on Lauren’s experiences and the net good that has come out of her connections, studies, and work with neurodiversity, it wouldn’t be an Emily For President installment without harsh realities and unnerving statistics.
People of the World!!! Neurodiversify Your Life!!!
If you thought this piece was going to be purely educational without scandal or drama, think again! Earlier today, Lauren sent me an article that had been published in The 19th last week about how the sociologist largely credited with coining the term neurodiversity actually didn’t do that.
As lore has it, Judy Singer was “the first person” to use the term neurodiversity in her 1998 honors thesis. Last summer, Singer posted a series of transphobic tweets to X for which she rightfully received backlash. Then last month, a group of autistic activists and scholars published an open letter in the journal Autism titled “The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory.” In it, the group argues that the concept of neurodiversity was coined two years earlier by members of the online autistic community, Independent Living (InLv), and should therefore be attributed to the collective “rather than attributing it to any single author” (X).
The significance of this is profound for several reasons—first, it reminds us of how often the case is that marginalized or minimized communities are often the ones who save and best represent themselves. Second, it underlines the importance of rectifying misconceptions and preconceived notions, particularly regarding neurodiverse individuals.
I wanted to kick off this section by asking Lauren:
Emily: What are some of the most common misconceptions about neurodiversity and neurodivergence?
Lauren: I think the biggest misconception is that neurodiversity and neurodivergent are the same because they’re not. Neurodiversity is the whole spectrum of how brains can function whereas neurodivergence means that your brain is different from neurotypical, or the typical way that a brain works.
Another misconception is that a diagnosis or a label predicts how someone will behave. While it is, of course, a little true in that certain diagnoses have certain presenters and certain symptoms, this is more medically true than socially true. I encourage everyone to look up medical versus social models of disability because it is really two different ways to look at disability and neurodiversity. The medical model has a time and a place especially in the medical field; however, the social model is a lot more neuroaffirming and an empathetic way to view the world.
Lastly, I encourage people to look up and listen to neurodivergent voices as opposed to reading the studies by the white male doctors that claim to have fixed the problem of whatever diagnosis someone is looking up. As a neurotypical person, it is easier to understand and listen to neurotypical voices but that is ignoring the whole side of a story that really isn't ours to tell.
It’s estimated that
15 to 20 percent of the world’s population is neurodivergent. This includes up to 10 percent of people with dyslexia, 6 percent with dyspraxia, 5 percent with ADHD, and 1–2 percent with autism. Other neurodiverse conditions include dyscalculia and Tourette’s syndrome (X).
Friends, don’t feel bad if you, like me, looked at 15-20% and went, “Huh…I thought that number would be bigger.” However!!!! The world’s population is currently clocking in at 8.1 billion, so 20% of that would mean 1.62 billion people are neurodivergent. When you frame it that way, it not only becomes jarring but downright shocking that we do not regularly take neurodiversity into account in our everyday lives.
The word inclusion comes to mind around this point in the conversation but through talking with Lauren, I realized that—along with everything else covered here tonight—our society has not been approaching inclusion in a way that is necessarily beneficial to the people it supposedly aims to help.
I asked her to explain:
Emily: Can you talk about inclusion and how it may look different than many people imagine it?
Lauren: I absolutely love this question because so many people see inclusion as a physical thing, likening inclusion to integration and it’s not. Inclusion is very much a theoretical framework that can be implemented in many different ways.
I have seen a lot of research and heard first-person accounts that say that some autistic people prefer to be in autistic-only spaces because they feel the safest there, they don’t have to mask, and they can communicate best. Inclusion can most definitely mean a space where neurodiverse minds are together, whether in a school, club, or park setting.
For me, inclusion is making whatever is the best setting for any individual person as comfortable as possible and creating neuro-affirming spaces that are catered towards specific disabilities. It can be easy to categorize people by disabilities or by the way that they appear however, that is a very surface-level way of identifying what inclusion means. Neurotypical people are generally the privileged people in power who decide what inclusion looks like and that in itself is not fair.
I think to have true inclusion, you also need to have neurodivergent people in positions of power, whether that’s an organization or school or a district level to share what inclusion means to them as well. That is something that I think professionals in many fields are not doing as much as they should.
When it comes to neurodiverse inclusion in the workplace, there have been some…um….blatantly capitalistic approaches to basic human empathy. Years ago, neurodiversity was frequently described as a “competitive advantage.” Take that linked article, for example: it’s well-intended, covering programs designed to specifically hire neurodiverse individuals and offer individualized accommodations. But the tone of the piece and certain comments make it seem like no one has ever hired neurodiverse people before, and they’re a secret weapon companies can use to both boost their reputation and their bottom line.
You probably already work with neurodiverse people whether you realize it or not. The takeaway from that, by the way, should not be, “How do I harness their secret neurological superpower for my financial gain???” but “How can we all make our existing spaces better for those already in it?” (This article, coming six years after the previous one, is well-researched with easily applicable changes.)
I wanted to pivot here because while it’s true you probably already do work with neurodiverse individuals who know they’re neurodiverse, you might also be on a team with many who have never been properly diagnosed. I’ve been seeing quite a few trends on my TikTok’s For You Page as of late, many of them involving the most annoying CapCut templates you could ever imagine. But I did want to talk with Lauren about the trend I’ve seen of people self-diagnosing themselves with neurodivergent conditions.
Immediately, the sentiment of the videos reminded me of my conversation with my sister Audrey from nearly two years ago. Back then, we discussed the problems that come when we desensitize ourselves to mental illnesses by glamorizing them or turning them into personality traits. As Audrey explained,
Audrey: I think the way people use social media to talk about mental health on platforms like Instagram, X (Twitter), Snapchat, and TikTok, in particular, makes mental illness out to be “trendy.” It’s so cringe saying it, but social media addresses mental illness in the form of memes instead of a legitimate conversation. It has coined terms like “trauma dumping” and “depression meal,” or just general shock humor that people use to express feelings about their mental health rather than productively talking about it.
People will use their finstas [fake Instagrams] or private stories to post crying selfies with a caption attached about some really hardcore shit like depression, bipolar disorder, and eating disorders. This is not a healthy way to talk about it, can be triggering to other people, and, in general, just benumbs people so that they don't understand the magnitude of the problems surrounding them…
By the time I got to high school, I was aware I had depression and I knew I was dealing with anxiety pretty intensely, yet in retrospect, I really did not have an appropriate outlet to put all of my thoughts and emotions. It almost made it feel like my mental illness wasn’t real because I was so numb to the feeling of it and the way I addressed it, that I didn’t realize how heavily I was living with the weight of it. As dramatic as it sounds, it’s very real, and it’s not until you get to the other side that you realize the truth of that matter.
It’s important to note that some people do consider mental illnesses to be neurodivergent disorders while others have argued neurodiversity advocacy will have the same effect as Audrey stated desensitization does above. Again, the word of the day is nebulous in that all of these conversations are just as medical as they are social and, although I’m talking very broadly, how people approach neurodiversity is often incredibly individualized.
However, the more I talked with Lauren and started looking into things, the more I started to feel that perhaps the two trends—desensitization and self-diagnoses—were actually notably different.
I wanted Lauren to put it in her own words first, so I asked:
Emily: What are your thoughts on the rise in people self-diagnosing themselves with autism, ADHD, or other neurological conditions? Do you think this trend is more helpful or harmful?
Lauren: For me, this falls into the realm of if it doesn’t affect you why does it upset you? Access to receiving diagnoses is not easy and there are barriers that affect essentially anyone who is not a white male to receive this or any diagnosis.
What autism looks like has been studied primarily in young white boys and so anyone who strays from that will be harder to diagnose because they will not present in the same way. Autistic girls, for example, are largely undiagnosed because of the lack of research. This is true for any neurodivergent diagnosis, so if someone sees on TikTok or has a friend that shares what a diagnosis means to them and they identify with that, what is the harm?
I think what is more important is the reasoning behind it—if someone genuinely hears about a neurodivergent diagnoses on TikTok and feels seen and understood by that and tries out different strategies that can help neurodivergent folks and it works for them, what is the problem with the self-diagnosis? Conversely, if someone uses a diagnosis to fraudulently make their lives easier like utilizing disability services that are not meant for them, that is where I draw the line.
I don’t think my voice in this is as educated or as personally knowledgeable about this so I take the viewpoint that receiving diagnoses and support for neurodivergence is often inaccessible, to say the least. Self-diagnosing, especially when it makes someone else feel more comfortable in their own skin, is absolutely harmless.
According to a study published in the peer-reviewed journal Children last year, “it appears that up to 80% of females with autistic spectrum disorder (ASD) have not been diagnosed by the age of 18. This translates to a prevalence of about 5–6%, and if true, has serious implications for female mental health.”
There’s no other way to describe that fact other than fucking unbelievable. And what’s worse, a UCLA Health blog post explains that “physicians still don’t have a strong understanding of autism in females. The autism assessment tools detect and measure known ASD traits—[are] established on a male baseline. Identifying autism in females is harder if their traits don’t match what’s traditionally considered ASD.” They truly said: here’s your problem…good luck, babe if you want a solution!
While, of course, autism is only one neurodivergent condition, this data shows that we are still missing critical information when it comes to understanding and supporting neurodiversity in our society. If we are neglecting this huge population from our studies, then we truly do not know neurodiversity at all.
You Gotta Make Your Own Kind of Inclusion
As is often the case here at E4P, I’ve tried to take a massive concept and make it make sense in 6,000 words or less. There are so many angles we can use to enter the concept of neurodiversity and discuss it, and so many more things we can talk about.
My aim today is not to create a SparkNotes guide to neurological conditions but to open the door to an ongoing conversation. The shear existence of a conversation like this is big: in a 2022 article for Vice, journalist Shayla Love wrote that
it’s worth saying that the neurodiversity movement is a broad one: It’s a leaderless and flexible paradigm that can have many interpretations depending on who is doing the interpreting…
It is a justice movement, advocating for the rights and inherent dignity of people with any mental differences. It is also a profound way to look at the world: where mental differences are not automatically pathologized, and, importantly, dysfunction isn’t assumed to be the fault of an individual person and their supposed deficits, but can be viewed as something that emerges from interactions with others and the environment. Thinking this way could shift the way we measure and respond to mental differences overall, but doesn’t necessitate erasing access to the individualized tools at our disposal. It can also be incredibly useful for people who, like me, have come up against the limits of trying to modify themselves, and provide a new way for thinking about oneself and others that goes beyond just the binary of “weird” and “normal…”
What the neurodiversity paradigm does is offer a framework for understanding and responding to mental differences besides seeing them as individual dysfunctions, or deviations from supposedly “normal” functioning.
Ideally, this is just the first in many discussions on neurodiversity we’ll have here at E4P—a sentiment that Lauren kind of echoed back to me when I asked:
Emily: How can we start better conversations around neurodiversity?
Lauren: Honestly, the way that we can start better conversations is by starting conversations at all. In the United States, neurodiversity and disability have historically been shunned and not spoken about. As kids, we are told to not ask questions and to not point out differences, and this is really harmful, especially in the field of neurodiversity.
One thing that we can do is to get curious. Of course, this does not mean to put your neurodivergent friends in a position where they are expected to answer your questions but asking questions like, “Hey, is there anything I can do to better support you or to better show up as a friend or a sister or a cousin or a mother?” I think that’s super valid and validating for neurodivergent people.
Questioning your own beliefs and the societal norms that you’ve been raised with and starting to question society in general—which I’m aware is a trend at Emily For President—but it definitely holds true here as neurodivergent folks have historically been treated less than human.
Neurotypical people have to listen and elevate autistic and neurodivergent voices. If you are in a workspace where you have the ability to affirm or even just acknowledge that neurodivergent individuals exist, there are so many ways in which you can show up and support your coworkers. A huge part of this is that as neurotypical people, we do not have the answers. We are going to make mistakes, we’re going to be in the wrong, we’re going to use the incorrect wording or language and that’s okay.
I think it’s harder to admit that you’re wrong than to listen to the neurodivergent voices correcting us or telling us how we can be better. Society is scared to make mistakes and scared to fail, but this is a place where we have been failing for hundreds and thousands of years anyway. As an individual messing up saying the wrong things, particularly if a mistake not on purpose, is fine but then it’s our job to listen so that we can show up for all of the different people in our lives as well as the world in general.
Listen, I’ve fessed up to being a troll, a hater, and Ben Affleck’s poltergeist countless times on this newsletter—I’m not a shining example of an upstanding citizen. But when I’m not being an out-and-out bitch hellbent on talking shit, I do try to live my life by The Harry Styles Credo, which is to say I treat people with kindness. And I think if more people lived by that—thinking less about what we can get wrong and more about what we will do right by each other the next time, as Lauren said above—we’re only setting ourselves up for success to grow and be better to one another.
With that, I wanted to ask Lauren for small steps we can all take to treat neurodiverse friends, family members, coworkers, and perhaps even ourselves with kindness:
eurodivergent people on social media—that is how I have found and adopted a lot of my inclusive strategies. It opens your world to understanding where other people are coming from.
Take something like avoiding eye contact for an autistic person: when you follow an autistic person and hear in their own words why they don’t like to do it and some of the experiences they’ve had when people are rude to them because they don’t maintain it, it’s a lot easier to just genuinely understand and then adopt that perspective into your norm of thinking. Oh, this person doesn’t feel comfortable looking at me versus this person is being rude by not maintaining eye contact.
In terms of personal life, that is an easy way to implement an inclusive mindset and norms into your daily routine. Another way is to spend time with the neurodivergent people in your life or enter more neurodiverse spaces. Maybe try volunteering somewhere or becoming a mentor for autistic young adults in the workforce—whatever that may look like to you and feels authentic.
I just encourage people to add neurodivergent insight into their lives wherever it can fit.
Admittedly, I’ve found myself saying the phrase, “We’re really in the worst timeline,” quite often as of late. But I want to remain optimistic and idealistic and carry a sparkle in my pocket if for no other reason than so that I don’t ever end any newsletter installment on a demoralizing note.
To close out today’s piece, I wanted to try to see the world through Lauren’s eyes. While not rose-colored, her perspective has made me feel, dare I say it, hopeful that becoming better people might not be as hard as I once thought.
I asked Lauren:
Emily: In your ideal world, how would our society make space for neurodiverse individuals?
Lauren: Oh gosh, in my ideal world we wouldn’t even need labels and diagnosis and neurodiversity terms honestly because we would just all empathize at a human level with each other regardless of how people showed up.
As soon as we can developmentally notice differences in others, we generally make fun of those differences. That does not mean that we are bad people or if you are doing this right now that you’re a bad person—it is quite literally a psychological human thing to be afraid of difference, especially in the current society we live in.
But in my ideal society, I think that would not exist. We could see differences and just be curious as opposed to judging or being afraid or letting our unsureness show up as judgment.
Emily: Are there elements of that ideal we can implement in this world?
Lauren: I think what we can do is work hard to train our brains to question differences as opposed to being quick to judge. I say this out loud to myself--it is hard to do. It is a lot easier and quicker to see differences and avoid them or ignore them, especially the older we get and the more ingrained our own schemas and views of the world become, and especially as scarier and difficult to navigate this world becomes.
But human to human, I challenge everyone reading this to see differences and just acknowledge them. So many accounts of neurodivergent folks or parents of neurodivergent people talk about how isolating it is for people to just look away on the streets from their children or from them because they’re different, and how dehumanizing that is.
I challenge us as a whole to approach differences from a place of potential connection versus avoidance.
I hope that amidst questioning society and being shocked by statistics, connecting with others has also become a noticeable trend here at Emily For President. If we truly are in the worst timeline, I’d rather go down with all of you.
So many thanks to Lauren for joining me today and for being a really great person!!! Make sure to check out her list of resources for neurodiversifying your life here!!!
As always, I try to find reputable sources when I conduct research for a piece but whenever we talk about health and wellness, I do try to go a step further and figure out if any outlet has a discernable bias. To my knowledge, Medical News Today seems to be neutral with a focus on fact-finding rather than crafting flashy narratives.
A SLAY AS ALWAYS