Not Quite Autistic: What's in My Neurodiversity Grab Bag
“There’s no such thing as being a little bit autistic.”
I’ve heard this phrase many times. It’s a common refrain in the autistic community, and for good reason. Whether they’re stereotyped as Rain Man or subjected to damaging “therapy” like ABA that punishes them for flapping their hands, autistic people experience so much judgment just for being who they are. And in a society where neurotypical people toss out diagnoses flippantly, saying things like “I’m so OCD” because they like to keep their home organized, it’s understandable that autistic people fiercely defend the boundaries of their condition.
But what if you are a little bit autistic? What if you have some characteristics of autism, but not the whole enchilada? What happens when you have a mixed bag of traits — not quite autism, but definitely sensory processing disorder (which you had never heard of until you were almost 40), perceptual and learning disabilities that weren’t identified in childhood testing but affect you every day, anxiety through the roof, PTSD but it’s mild, and some traits of ADHD… oh look, a squirrel! Howdy folks, welcome to my brain. This is what’s in my neurodiversity grab bag.
I have cerebral palsy, a disability caused by brain damage at birth. I use a power wheelchair and have limited use of my arms, but as a child, an IQ test put me in the highly gifted range. My mother was a special education teacher before I was born, and she always told me that I didn’t have any learning disabilities. To this day, I don’t know why she said that over and over; maybe she just wanted me to believe it.
I could read by the time I was 3, and I’d always get a gasp out of my doctors and therapists when I’d use long medical terms related to my disabilities. Spasticity. Clonus. Asymmetrical tonic neck reflex (imagine a toddler spitting THAT one out). Tactile defensiveness. That one was by far the worst, because it didn’t fit with the others. It had judgment attached to it. It was supposedly about my body, but it felt like it was about my mind.
Children and adults who are tactile defensive find a variety of everyday touch sensations to be repellent and/or painful. I was a very picky eater and only liked pasta with butter and other “plain” foods, most of which are very flavorful to me. Going barefoot in the grass felt like being stabbed with needles. I couldn’t stand to touch anything sticky or gooey. To desensitize me, my mother would spray shaving cream on a plastic plate and stick my hands into it. That made me cry, but it wasn’t as bad as having to hold onto a wooden cylinder or a metal can full of dried beans while she pounded on the top. The noise and the sensation made me scream. I actually blocked that from my memory; it came back as I was writing this.
Fireworks can leave my nerves frazzled for hours. Never sneak up behind me and scare me for fun; it makes me jump out of my skin. I love Halloween, but I have to mute scary movies just before the jump scares happen, and most haunted houses are too much for me. Like many people with cerebral palsy, I have an exaggerated startle reflex, but no one explained it to me; I had to find out about it as an adult from people on a CP Facebook group.
I had both sensory meltdowns and panic attacks as a child. I didn’t know those terms, just that I had “tantrums” I should have outgrown years before. My parents would get angry that I couldn’t control my emotions, but I had to scream and scream until I collapsed, or have someone comfort me, which the parenting wisdom of the time said would be spoiling a child and encouraging the behavior. I needed help learning to regulate my emotions, but never got it, because no one understood or listened when I tried to explain what my “tantrums” felt like. In their minds, I was a smart kid who should know better and needed to grow up.
In school, I excelled in every subject except math, where I struggled, but everyone tried to keep pushing me into advanced math studies. I was “gifted,” after all. And as I started to learn life skills as a teen, I began running into perceptual problems my peers didn’t experience. I struggled to read maps, to figure out which direction I was going. I get lost indoors too, where GPS can’t save me. Schools, office buildings, and hotels are a nightmare for me to navigate. I’ve been embarrassed to the point of tears after turning the wrong direction for the exit when leaving a hotel room I’ve been staying in for several days.
People don’t understand how I can have a Master’s degree but be unable to find an exit or have to go to the grocery store 10 times before I can remember where it is. I sense their confusion and their judgment, and I feel humiliated. One of our Mighty contributors, Michelle Steiner, described this experience perfectly: I am “caught in the act” of being neurodivergent.
My neurodivergence shows in other ways, too. I have strong special interests, a characteristic of both autism and ADHD, and the way they manifest seems to be a combination of both as well. My most enduring special interest is musical theatre; I was a huge “Phantom of the Opera” fan for years, though other shows have surpassed it for me now. I also have what I call “rabbit holes” — interests I’ll dive into intensely for a few days or weeks at a time and return to periodically. As a child, I tended to be obsessed with one or two interests and didn’t want to talk about anything else, but now, I can shift between topics and mostly avoid irritating or boring people.
In my experience, neurodivergent people with similar interests and communication styles tend to naturally gravitate toward each other. I met many of my friends through a shared special interest, or we have different special interests we enjoy discussing with each other. We can “infodump” a bunch of thoughts about our interest(s) and the other person will naturally realize what we’re doing instead of getting annoyed. Once we’ve finished, the other person can ask questions, make comments, or share their own infodump, possibly on a totally different topic, and that’s OK. I love learning about other people’s special interests and exploring new ideas in detail.
For years, I didn’t notice this pattern or realize that it was unusual. But after several of my friends received or revealed their diagnoses as adults, it made me wonder about myself. If I am hanging out mostly with neurodivergent people, what does that say about me?
The thing is, every time I take one of those online autism tests, it tells me I’m not autistic. And the reason why is clear to me when I answer the questions: social skills. My answers on the two halves of what defines autism are starkly disparate. When it comes to sensory processing, I clearly meet the criteria, but I don’t have major difficulties with social situations. I’m an introvert and I think small talk is silly, but I can mostly handle everyday social interactions. I need a certain amount of routine and can be majorly thrown off course if things change unexpectedly, but I don’t think in black and white — quite the opposite, in fact.
Like many neurodivergent people, I often “mask” (hide) how I’m feeling in certain situations, but my sensory processing disorder has improved somewhat since childhood. I can now eat a fairly wide variety of foods, though I’m repulsed by textures like cooked spinach and still love my “bland” favorites. Although I have more panic attacks, I rarely have meltdowns, unless I’m in extreme physical pain or massive sensory overload with no way to escape. This all leads me to conclude that I’m not quite autistic — but I am also most certainly not neurotypical.
Where do people like me fit — the almost, the not-quite, the in-between? We break the rules and mess up the neat categories. There’s already a lot of community infighting about who is “autistic enough” — though it’s mostly neurotypical parents hosting an Oppression Olympics because they think their kids with high support needs are the only ones with “real” autism. That’s clearly not true, but also, however much some might want it to be so, there is no bright line between autistic and not autistic, because human minds don’t work that way.
Autism, sensory processing disorder, ADHD, and other developmental and mental “disorders” are concepts invented by neurotypicals to describe people who don’t fit into narrow little boxes. Some people fit neatly into the categories they created, but others don’t. And that’s OK. We don’t need to compare or one-up each other because all of our experiences and struggles are valid.
With that said, as an in-between neurodivergent, I don’t want to step on the toes of people with a clear diagnosis who already have neurotypicals questioning them from all sides. I want to stay in my lane, but I don’t really have a lane to stay in. I do know that I can’t and won’t speak for someone with an autism diagnosis (or who knows they’re autistic but can’t get diagnosed because our health care system is broken), but I can be an ally. I can also speak up when I encounter sensory and communication inaccessibility, because I usually notice it, even if I can cope with it to some extent.
As a community and social movement, neurodivergent people have reclaimed the diagnoses originally designed to pathologize them and instead made them a core part of their identity. Most autistic people prefer to be called autistic, not a person with autism, because autism shapes how their mind works and how they perceive the world. Many people with ADHD embrace the creativity and hyperfocus that tend to be part of their neurology. The neurodivergent people I know are unique, brilliant, and in no way broken. The world is a better place because they’re in it. But I’m still working on extending that acceptance to myself.
I have struggled with how my neurodivergence conflicts with the “smart” image people have of me. I have started being upfront with people to stop judgments before they start. “I get lost in buildings sometimes, please be patient and don’t laugh at me.” “Thank you for inviting me to see fireworks, but my body and mind don’t cope well with sudden loud noises.” I also recognize that my emotional sensitivity, creativity, and strong connection to others who are different stem from my neurodivergence, and those are all positive qualities.
None of us get to choose what’s in our neurodiversity grab bag or whether it neatly fits into a diagnosis that currently exists. But whether we are neurotypical or neurodivergent, we can choose to be our unique selves, accept others, and do our part to make the world a more accepting place for all kinds of minds.
Getty image by Vitaliy_oh