“YOUR Autistic”*

* Before I begin, I just want to note that I’m using some direct quotes from another person in this post that I disagree with content- and grammar-wise. Not that I don’t make plenty of my own grammatical errors, but I just want to set the record straight that I know the title of this post (and several other instances in here) are incorrectly written as “your” (or in her preferred style, “YOUR”) instead of “you’re.”

I have a short rant today. I’m a member of an online support group for adults on the spectrum (well, I’m a member of quite a few, but this story pertains to just one of these such groups). Unsurprisingly, none of us seem particularly well-versed or comfortable in casual conversation, so the group moderator, a licensed social worker who works with verbal adults on the spectrum, often poses a question so we have a launching point from which to form a discussion. Yesterday’s question centered around the challenges experienced for those of us in an ASD/neurotypical mixed relationship. It’s actually a great question with many varied responses and something that warrants further exploration and attention to explain, but that’s for another time.

What bothered me was that a neurotypical woman in the group (who has a husband on the spectrum) jumped in with her usual negativity and finger-pointing at the shortcomings of her husband with his “impossible ASD behaviors and impairments.” She further argued that it’s impossible (across the board) for mixed couples to be happily married and maintain a healthy, mutually-beneficial and enjoyable relationship. I wholeheartedly disagree. While my husband and I have had, and do have, our share of challenges, not all of them stem from differences in neurology, and even those that do are not insurmountable. Moreover, the reason she cited for saying that neurodiverse (mixed ASD/neurotypical) relationships are doomed to fail was that “autistics are unable to have any emotional awareness and desire to care for others.” This made my blood boil because not only do I disagree, but I also feel like attitude puts the onus of every relationship issue exclusively on the ASD partner. Instead of heeding to my normal passive, wallflower approach in an effort to prioritize avoiding conflict, I stuck my neck out to question her assertions and defend my viewpoint. I also asked her to explain what specific behaviors or issues her husband exhibits that she finds particularly offensive or incompatible with a successful mixed relationship.

My prediction was that I was possibly misunderstanding (since that is engrained in my psyche from frequently misinterpreting verbal and non-verbal communication as well as intentions and customary behaviors at large) and that after I probed with clarifying questions and tried to poke holes in her stated argument, she’d explain and soften her stance.

I was wrong! She jumped on my response and said, “Of course you’d think that aspies or autistics are capable of knowing their emotions and caring about someone else, YOUR [sic] autistic!” First of all, I don’t like the term “aspies,” and not only did I find this to be a pretty immature and finger-pointy response, but it also didn’t feel kind or respectful of my opinion and it didn’t answer my request for specific examples.

I didn’t respond.

About two hours later, she added, “If your [sic] impaired yourself, you won’t understand.”

That prompted me to again push myself out of my comfort zone and confront her. I said, “I wish you wouldn’t make such sweeping generalizations about the ability of neurodiverse people to be competent partners. I feel that it unfairly places limitations on what you actually are able to see in the capabilities of people on the spectrum because your mind is already closed to any possibility that perhaps some of us are able to be good partners.”

She replied that there is no need to keep an “open mind” when the “facts clearly point in one direction.”

The truth is that I have no idea what their relationship is actually like, what her husband’s strengths and weaknesses are, and what her past experiences and expectations of relationships are. However, I can only imagine that she may also be somewhat limited in her communicative abilities, her patience and understanding, and her ownership and self-responsibility of any issues in the relationship. She seemed to carry a “holier than thou” attitude and my concern is that that may blind her ability to look introspectively at how she might be contributing to relationship issues and similarly, her self-efficacy in improving any of those issues and shaping and guiding the relationship into the direction she so desires. Making blanket statements about an entire group of people (or type of neurology) is inherently flawed and I’m suspect of anyone’s position if it makes such gross generalizations in a black-and-white fashion. I can only hope that she was either having a bad day or coming to the forum on the tail end of a big argument and thus, blowing things in her relationship out of proportion (we’ve all been there!). I also hope that her husband is self-aware and cares for her emotions and needs, but that there is reciprocity in her participation as a partner.

It also made me acknowledge that I’d rather carry the challenges that I do with my “spectrum brain” and still be the best partner (and person) I can be despite those challenges than be neurotypical and perhaps a “better” partner on paper, but lacking the awareness, interest, or diligence of being my best self. No one is perfect. No relationship is perfect, but I certainly don’t think that neurodiverse couples can’t be mutually happy in a healthy relationship. I also think that the first step in being in a positive relationship is reflecting on your own weaknesses and role in any observed problems and working to improve those. If you’re having trouble identifying these, it is likely that your partner can fill you in! It is never the wrong time to admit that you have things to work on and dedicate some attention and thought into self-improvement. One last thing and something I’m personally working on is having the courage to stand up for what you think is right, despite discomfort, especially when something poses a conflict with your morals or the rights and respect for other people.

Shades of Gray

The other morning, my husband and I got into a small argument (disagreement? me being stupid? I never know what word to use). In a nutshell, more frequently than I’d like, I say things that hurt his feelings or frustrate him. Anyone who knows me, or us, hopefully knows that this couldn’t be further from my intention, but it is the reality. Of course, Ben’s feelings are valid, even when it’s not how I expected or wanted him to feel.

The issue seems to stem from the fact that I don’t see how the way I say things is more _____ (insert word: mean, rude, harsh, critical, etc.) than the alternative that Ben suggests as a “better” way to say it. For example, for this particular morning spat, I asked Ben what he was doing while I was out. Somehow my tone or word choice conveyed to him that I was criticizing his choices or thought he was wasting time. (I didn’t. I wanted to know how he had filled his last hour because I missed him.) When you’re a couple, the relationship reminds me of nodes of Ranvier on nerves or the simultaneous graphs of sine and negative sign. Since some people may not be as nerdy and strange as me, I’ll try to make a less geeky analogy. A relationship in my mind looks kind of like links in a chain. When you are physically together, your experiences and conversations likely overlap. Perhaps it’s a Saturday afternoon and you’re watching a show together, maybe you’re on a date at a restaurant and talking, or you might be walking to the library together. Either way, you are privy to at least an idea of what the other person is doing, thinking, and feeling. These are points on the chain links where the loops come together (or the intersections of the periodic functions). Then, there are the times that you diverge. Different responsibilities and expectations, varying interests and commitments, pull your paths apart for some time. Sure, you can surmise what the other partner’s experience was like during that time, but you don’t actually know unless you talk about it when you converge together again. What went on? How did you feel?

I asked Ben to teach me how what I said was “wrong” and what I should have said, given my intended meaning. I’m doing social skills therapy with a professional but I am all about pulling out all the stops. Why not get 24/7 coaching when possible, especially from the person I am most interested in communicating with. This happens frequently and he’s always able to rephrase it. The difficulty is my reception of what he’s trying to teach me (and what prompted this blog post).

I don’t see a difference. Sure, I hear different words actually being strung together, but I am completely blind to which is “better” or “nicer.” Both the differences in word choice and apparent tone are completely imperceptible to me. The analogy I made to him is this:

We can consider the colors black and white and then understand that besides just this dichotomy, there is gray. I can hear that the two sentences are different. But instead of being black and white and a shade of gray, it’s like the scale changes for me. In my nutty brain, there are so many, many, many, many shades of gray between the black and white sentences. Imagine getting the big box of 256 crayons. Inside, instead of all the vibrant colors, there is one black crayon, one white crayon, and 254 varying shades of gray crayons that ever so gradually span the difference in hues between black and white. Instead of the two possible sentence choices falling on opposite ends of the spectrum, or even relatively far apart, they are two adjacent shades of those 254 shades of gray with such indistinguishable minutia between them that their difference is invisible to me. To keep with the crayon analogy, I can roll the crayon on its side and read the color name and then try to match it to its designated order, but unassisted, I have absolutely no idea that they carry different meanings and especially, no clue as to which is better (or kinder).

This creates a very frustrating cycle, both for me, and I imagine, for Ben. Because I don’t understand the difference in social phrasing, and especially tone, I can’t learn the pattern or the “rule” and therefore, I can’t learn (or even program!) myself to correct my behavior before it happens. Why is it that I can learn about so many things that fascinate me (and even those that don’t) quite readily, but when it comes to communication and social behavior it just doesn’t stick?

I never want to say something harsh or hurtful, especially to someone I love and respect so deeply. For now, all I can do is harness my frustrations in my social blindness and deficits and try to divert it to improving the synchronicity between my intentions and my communicative abilities. For Ben, my family, my current and future friends, and myself, I will try as hard as I can to learn the social skills so that I can express verbally what I feel in my heart. It is with such pain, heaviness, and anxiety that I carry this insufficiency. It even prevents me from getting close to people or reaching out because I’m afraid I’ll say something stupid or confusing. In my own autistic brain, the words carry a different meaning. Why is it that I can sing and play instruments with a full appreciation of different tones and pitches, but when it comes to speech, I am completely tone deaf? I often struggle to interpret and differentiate different tones and moods. It’s amazing how many gaps exist in language comprehension when you miss or misinterpret the layers conveyed by tone. (For example, sarcasm is completely lost on me.) What can I do? Keep trying my best to figure out this puzzle, keep communicating as clearly and honestly as I can (sometimes writing is best for me!), and keep asking for patience and understanding from those around me.

Empaths: I Feel What You Feel

There’s a fair amount of controversy, confusion, and misunderstanding surrounding the relationship between empathy and autism. Of course, autism is a spectrum and there are as many presentations of it as there are autistic individuals, but one of the classic and traditional diagnostic criteria assessed empathy, with the notion that autistic people lack empathy. I don’t feel qualified or informed enough to comment on any sort of “autistic population” at large, but I do know that there is a subset of autistic people, particularly women, who are extremely empathetic. This is sometimes speculated to contribute to the frequency of females evading proper diagnosis at a younger age: the screening tools employed are looking for one thing (significant lack of empathy), while the characteristic is radically different. This makes as much sense as a taxonomist deciding that in order to be classified as a mammal, an animal must lay eggs. Sure, there are a handful of mammals that do (platypus and echidna), but many (and most) don’t.

It might surprise you to know that the adult females that I’ve met who have autism spectrum diagnoses tend to consider themselves to be overly sensitive and empathetic. My occupational therapist describes us as Empaths. Besides just understanding the emotions of others, we feel them, viscerally and emotionally. If someone is frustrated by a situation, we feel frustrated too. After the death of a friend’s loved one we may not even know personally, we cry because we know they cried. If someone is depressed, we absorb that emotion and join them in that place of heartache and sullen heaviness. It can even extend to physical mirroring, as I call it. In this context, as someone else describes or exhibits physical pain or discomfort, we may feel it as well. This is something I frequently experience, which is both bizarre and uncomfortable, both socially (embarrassing) and physically (who wants to experience additional pain?). If I’m trying to be a good listener and sympathize with someone’s discomfort or burden, my job doing that is polluted and challenged if I’m empathizing instead of sympathizing. It’s their time to complain and express; it’s my responsibility to be a supportive listener, keeping the story in their narrative instead of entering it as a participant. Instead of feeling fully engaged and focused on listening and showing care, I find myself expending significant mental energy to fight the pain I’ve taken on by imagining I’m them and pretending I’m completely physically fine as I should be. It’s distracting and frustrating; it’s already hard for me to understand language and communicate socially, so the last thing I need is additional roadblocks. This “physical mirroring” happens to me most often with people I know and care about, but also sometimes with characters on TV or in books, especially with animals and children.

This weird empathetic phenomenon can even extend to inanimate objects. When I see things that look like they should be alive, I panic when they look trapped or damaged. One of my favorite little annual traditions when I lived in New York City was browsing the Christmas craft village at Columbus Circle: a bevy of unique artisans displaying their products in rows and rows of tents. I am obsessed with lions and I went with mom my last year in NYC and we bought this stuffed aromatherapy lion who had a pouch for a microwaveable scented heart that was supposed to aid relaxation with a calming lavender aroma. Well, the woman selling the lion tried to remove him from the plastic packaging he was in. His head was out but his body was ensnared in a flimsy clear plastic box to help display him. She started wrestling to get him out, holding him by the head to pull his body through the neck hole, and I had a MELT down. I totally freaked out, crying and crying, telling my mom he was hurting. My own neck started feeling strangled and I felt the weight and pressure of a confining enclosure around my limbs. It was real and it was admittedly embarrassing: a 26-year-old in a puddle of tears and a coughing fit, yelling “don’t hurt him!” over a stuffed toy. Passersby most likely misinterpreted my behavior to be a grown adult throwing a toddler’s temper tantrum over my mom saying “no.” I could feel the rise of body heat that comes with shame as it battled my compassion for the lion’s painless pain; after all, I’m fully cognizant of societal norms for adult behavior and I was violating all of them (I’m also aware that a stuffed animal is not actually in pain). Mom had to interpret through my halted gasps and tears that yes, we wanted the lion, but no, please do not continue to remove him from the box for our inspection; he looked just great. I don’t think it was a matter of too many read-throughs of Corduroy as a kid, either. It’s just the way I’ve always been and I can recall many similar incidents.

What I’m trying to say is: challenge and question stereotypes, and operate from a place of curiosity and compassion when you encounter something you don’t understand or that contradicts your previously established thinking. Don’t assume that someone is a certain way or doing a certain thing because they are “autistic” (or any other diagnosis, race, religion, or any other categorization). Many disabilities are invisible, but everyone has a story and everyone, for the most part, is doing their best. Don’t assume autistic people don’t care about your feelings or thoughts; don’t misinterpret their responses as a lack of compassion or inability to empathize. Like all groups of people, we are all different and some of us absolutely care, more than you could know. We just may lack the ability to communicate or demonstrate that compassion in the “normal” way, or we may be caring “too much” and don’t want to overshadow your needs.

Autism, like all the labels I carry, does not come with a uniform. We don’t all look, think, feel, or act the same. We are like you and very different from you. Many of us, like many of you, are looking for connection, compassion, patience, and understanding. When in doubt about our (or anyone’s) intentions or behavior, just ask. After all, isn’t it interesting to learn about someone else’s world experience? Don’t let “differentness” or confusion prevent you from connecting. Let those with differences into your world and shatter whatever stereotypes you may consciously and unconsciously hold; let us be missionaries of love and understanding, students of human nature and of each other.

Bending Won’t Break Me

I’m about as far as one can get from being spontaneous. I often refer to myself as “robotic” in that I do the same thing at nearly the exact same time every day under my own volition. My job is flexible, I don’t have kids, and I theoretically can schedule my time as I so please and so I do: I choose routine. Even my weekends are quite regimented and look remarkably similar from one to the next.

Routine makes me feel calm. It gives me something concrete to count on, something stable in my seemingly unstable mind and in the confusing, overwhelming world around me. I’ve always loved routine and the stability of a schedule, and I think that’s fairly common for people on the spectrum. Change, even switching tasks between things I enjoy, is very stressful and anxiety-provoking for me; it causes irritability, headaches, and even meltdowns. However, it’s grown from enjoying and abiding by a routine in a (mostly) healthy and organic fashion, to clinging so tightly to one that it feels like a clinical disorder. On the day I was attacked, I was doing something out of my norm, attempting to surprise my husband by doing a bunch of extra chores so that we wouldn’t need to on the weekend, freeing up time for something more fun. I think this fact, combined with the fact that I have since become very cautious and calculated, has exacerbated this limited capacity for spontaneity. I feel simultaneously pacified by my strict, predictable schedule and trapped by my grip to routine and inflexibility. I want to be able to deviate more easily and comfortably. I want to jump on spontaneous plans and fly by the seat of my pants, so to speak. I want to be the fun, adventurous wife who plans a last-minute outing on a Friday night, surprising my husband with some sort of wild date night rather than predictable pattern of comfort (not that we don’t have fun, it’s just it’s always a predictable kind of thing).

Today, I pushed myself. Instead of my usual engagement at 12:30pm on a Sunday of doing work for school, I announced that I wanted to go to the Spring Bulb show at Lyman Plant House and Conservatory at Smith College. My husband, understandably shocked by this suggestion, was happy to go, and, bless his heart, is always able to get ready quick enough that I don’t lose my drive.

The Bulb Show itself was great. There’s nothing like a whiff of spring on a 10-degree day to help you feel less irritable. I always enjoy looking at flowers and examining their structures for patterns in the leaves and petals. Nature crafts the most beautiful and perfect rhythms in its structures. I also got to see my family and talk about real stuff in our lives that matters. I spent quality time driving there and back with my husband. These last two things were the real benefits. Mostly though, I felt proud of myself for being flexible and doing something different at the last moment. I’m now trying to live my life in such a way that I seize chances to make lasting memories and grow individually and together with the people I love. It’s easier for me to stay at home and do what I know makes me happy and feels safe but it’s more enriching to stretch out of that comfort bubble and capitalize on the opportunities around me to foster my relationships, engage in activities, and build new experiences. I want to learn to grip a little less tightly to the things that I cling to. In the letting go, we open spaces to allow more happiness, connection, and meaning to enter and fill our lives.

 

Gradual Germination

 I have a lot of difficulty sleeping. It’s never easy to fall asleep and staying asleep is a nightmare (pun intended), as I am plagued with terribly violent dreams from my PTSD. My doctor has also told me that people on the spectrum often have symptoms of insomnia because of the sensory problems as well as from disruptions in melatonin and one’s circadian rhythm.

Sensory processing problems, for me at least, do seem to peak at nighttime. I think this is largely because they tend to build over the course of the day, like a crescendo in a musical piece that finally breaks into the final cord (or some sort of sensory overload meltdown) at night. I end the vast majority of my days with a terrible headache. My tolerance for sensory stimuli is completely exhausted by 5:00pm. Even a tiny sound—a gust of wind at the window, breathing, my own audible heartbeat against the mattress—drives me bananas. These sounds amplify with each passing second. An uneven whir of the fan (the infamous “pulsing” as it’s known in our home) is my nemesis, its rhythm paving paths of irritation on my cortex. I hate the slightest flicker of light; my poor husband fumbles around in the dark trying to get things. Even his cellphone glow (and he has the old, pre-smartphone type with a tiny screen!) bothers me.  My skin is the worst offender. I won’t even get into that right now because my intention for this post is rapidly getting buried among my sensory complaints!

Needless to say, I employ a strategically designed, carefully rehearsed sleep routine every single night, with the goal of “optimizing sleep hygiene” for better rest. Still, it’s far from good sleep and even further from flawless, which is why I find myself up every morning between 2:40 and 3:40am with a mind that is ready to start the day. As for my body, sometimes it leads the charge and is raring to go, while other times it feels as it should at 2:40am: like cement has encased it.

The other morning, I came down to find the flower pictured in this post in its full blooming glory. The bulb was gifted to me by my mother-in-law for Christmas. While I love flowers, plants, trees, and gardening, I am quite far from having that coveted “green thumb.” Historically, it seems like all my stuff initially grows and then, suddenly, completely succumbs to some sort of dramatic death. (To be fair, that was usually in the mouth of our curious Siamese cat growing up, who seemed to have a constant hankering for my “experiments” growing beans, seeds, and even moldy bread for a Girl Scout badge!)

Anyway, I stuck the bulb in the little pot, plunged it in the provided soil cake, watered it once, and put it on the shelf behind the TV. Oh, but she grew!

Without water for 9 weeks (only the initial wetting of the soil cake), without adequate light, without the TLC my plant deserved, she blossomed. My point in sharing this seemingly boring story is to make an analogy. Even though it’s hardly debatable that I deprived my plant from the things it needed, it survived. It thrived, in fact! The plant had everything it needed inside of its cells. It grew strong roots that are wildly trying to escape their plastic cage; it grew a tall, thick, luscious stem with healthy leaves; and deep vibrant red flowers with silky petals. Had I provided more water and light, I imagine it may have been an easier journey towards maturation, and perhaps today’s growth state would have been reached sooner. However, for nine quiet weeks, my plant used its own resources to figure out how to not only survive, but to thrive and express its beauty. We are much the same way. All of us have an incredible internal strength, a resilience to grow and succeed even if the stakes are against us, even when society, science, health, etc. appear unfavorable for us to prevail. Much like the plant, while there may be an optimal environment or helpful constituents for our survival, we carry within the knowledge, the power, the awareness of our needs, and the drive to grow into strong individuals.

Sometimes situations don’t feel fair. We look to blame luck, “God,” society, etc., and frankly, I think a lot of situations in our world aren’t fair (too many to name), but my hope is that we can all be like my plant, able to persist, so that someday, when it’s least expected, there is something beautiful that we are quietly (or boldly) projecting and breathing into the spaces around us. While we toil away and face challenges and pain, we are laying each strong cell in a calculated and purposeful arrangement, ripe with fortitude and care, into a structure—a life—that has meaning and value.

 

 

Oh, and I do plan to water this plant! Just because she can survive on her own, doesn’t mean she should have to. Be someone’s light and water: loving and supporting someone is never the wrong choice.

 

The First Step

I’ve been diagnosed and labeled with all sorts of things in my life, spanning the full gamut of medical and mental health issues, and while most transitions in my life seemed to bring about a host of new symptoms and resultant diagnoses, nothing really tied the whole picture together. Nothing ever truly explained why I felt so different, so off, and so close yet so far from everyone and everything I wanted to be. The one consistent thing in my life seemed to be the fact that I struggled with things that other people didn’t seem to struggle with and that I also didn’t know how to articulate these challenges. The irony was, for a person who is exceptionally gifted at finding patterns, I saw no method in the madness, no similarity in the symptoms and difficulties, and no way to predict or understand when something was going to be tough for me.

It wasn’t until early summer of last year, just before turning 30, that the pieces finally came together: I was diagnosed with autism. I, like many, received what they consider “a late diagnosis,” which is particularly common in women because of both a lack of understanding in terms of the presentation of autism in women, leading practitioners to miss the diagnosis, and to our uncanny ability to camouflage amongst neurotypicals by learning and emulating their behavior. (We are good at memorizing patterns (even in social behavior), perhaps to our detriment!)

For me, autism explains so much. It’s funny, because I think one of the symbols used by the autism community is the puzzle piece and although I don’t know much about this, I do know that for me, receiving this diagnosis was like finding that puzzle piece (or two) that slipped under the rug and finally fills the blatant gap in the middle of what should be a complete picture. In my own ignorance, I had no idea what autism was really like, especially in women, for which it can be quite different than media portrayals (think “Rain Man”…I’m nothing like that!).

For most of my life, I feel like I’ve lived two lives that are concurrent but not parallel. They bump into one another, they pull and push, they fight me for dominant expression because in any given moment, only one really gets to show its face. I have the life that I try to live externally: Here, I am a student of the world. I constantly observe, catalog data, categorize, and try to present myself the way I see in those around me. I carry on conversations by learning what to say, I go out, I laugh, I try to join activities, I work. This life exhausts me because it’s foreign to me. It’s a constant game of trying to understand, of calculating, of interpreting. It is somewhat like playing a character. It’s stressful because there is always the risk of messing up, which could open the windows for the other part of me to come out, to expose my weirdness. It wipes me out so much that prolonged periods of such behavior caused doctors to be concerned about my physical health: was it chronic fatigue, lupus, another underlying autoimmune issue? The other part of me looks just like everyone else at first glance. But I’m different. This part of me can’t stand the feeling of socks, tags, certain shoes, or seams so much so that it causes vomiting. It prevents me from tolerating things touching my skin in certain ways. I can’t wear my hair down and people call me a tomboy. Some people who have known me for 10 or 20 years have never seen my hair down. This part of me can’t take noises, especially repetitive ones. I can’t tolerate certain food textures without gagging, and while in full disclosure I did have an eating disorder as a teenager, I have since learned this is unfortunately common for women on the spectrum for a host of reasons, one of which I imagine is sensory-based. My list of sensory issues is so vast that it could be its own tome, but I will just say, for me at least, it is the most difficult part of my autism. In addition to affecting the five senses everyone thinks about, it also impacts proprioception, vestibular function, and what is known as interoception (the ability to sense internal stimuli such as hunger, body temperature, the need to use the bathroom, etc.). The sensory processing challenges of autism make it hard to be comfortable in my own skin, in the “comfort” of my own home where we can control the environment as much as possible. The real world? That’s a minefield of sensory bombardment; it’s one of the main reasons pretending to be normal is so exhausting.

The sensory challenges aren’t the only difficulties that the “real me” faces, and I’ll go into these more classic ASD-related difficulties another time, I imagine. The sad truth is that women, particularly undiagnosed, on the spectrum are at risk for various comorbidities like major depressive disorder, eating disorders, sexual assault, among others. Unfortunately, all of these have applied to me and I suffer the consequences of them today. While I could get into each of them separately and maybe will eventually, I share this because it’s one of the main reasons I’m choosing to speak up about my autism. Yes, it’s true that people on the spectrum (and people who aren’t) have lots of wonderful gifts. And yes, it’s true that we can blend in very well and “act normal,” evade diagnosis, and “be successful” in work, relationships, and life. But it’s also true that autism isn’t a minor challenge. It’s a real diagnosis that indicates a difference in the brain. Our brains aren’t worse, they aren’t better, but they are different. The issue with late diagnosis is that it further engrains the feeling of “differentness,” of confusion, and can exacerbate the challenges of the “disorder.”

My feelings of weirdness, loneliness, and a lack of belonging and understanding myself has caused major self-esteem issues and depression, so much so that at times in my life, I’ve been heavily medicated and suicidal. My inability to sense danger and to read people well likely contributed to my attack. That single day saddled me with what I will honestly admit is pretty debilitating PTSD. While I’m doing a lot better since that trauma in many ways, quite frankly, I have no confidence it won’t happen again unless I avoid people, which I don’t want to do. Had I known I was autistic younger, I may have devoted more attention and invoked more specific training to understand predators or at least how to defend myself. If nothing else, it may have alleviated some of the blame I put upon myself for so long.

I want to make it clear that I’m not bitter or upset that I wasn’t diagnosed earlier. I don’t blame all my weaknesses, challenges, and poor choices on being autistic. Receiving the proper diagnosis, even if “late,” simply provides more clarity for which to understand myself and learn to cope better, love myself more, be a better partner and friend, feel healthier, recognize red flags or challenges before they derail me, and feel less alone and confused. The day you stop learning and growing is the day you stop living. My goal is to begin to embrace who I am, to get to know myself better, to let others into my world a bit more, and to do my piece by opening up a little so that more people are aware of the tribe of autistic women. My hope is that increasing awareness will bring earlier diagnosis and possibly prevent some of the battles I faced for younger girls on the spectrum. An autism diagnosis doesn’t guarantee the struggles I have, it doesn’t justify my mistakes or shortcomings, but it is a bit like finally getting glasses when you’ve been squinting, stumbling around, and seeing everything blurry for years. I guess this analogy is particularly apropos for me: I just got glasses! So, to each person that reads this, whether I know you or not, thank you for your time, your interest in this topic, and for helping me start this discussion. Please connect and question me in any way that feels right to you. We are all at different parts of our journeys and in different paths but ultimately, we all, I hope, are just trying to do our best.