I’ve wanted to write a guide to autism as it exists for me, to clear up what it can mean to have autism, talk about myths, and also discuss why I was misdiagnosed with bipolar disorder.
Originally I wanted to share information like this during April, widely known as Autism Awareness Month, because of how harmful misrepresentation and misinformation is during that month. However, unfortunately, it is still very unsafe to reveal that I’m autistic to the general public because of how the public treats autistic people. It’s one of the only things about myself I’m afraid to be open about, along with being trans* (for safety reasons mainly—LGBTQA* and people with disabilities are at a much higher risk of being the victims of violent crimes—but also because I have no plans to socially or medically transition, and I don’t want to take being trans* away from the community that really deserves it, those who identify with it openly).
I just want to say that this guide to autism is written from my perspective. I am not everyone who is on the autism spectrum. To quickly sum this up: autism and Asperger’s are no longer considered different in the eyes of the DSM. They are the same. Autism exists on a spectrum—but that spectrum is not “more autistic” or “less autistic” (also known as high- or low-functioning). Functioning labels, as well as calling someone “more autistic,” is harmful and promotes misinformation. The spectrum just means that all people with autism experience symptoms differently. It is just like how not all people with cerebral palsy, or fibromyalgia, for example, experience the same exact symptoms, or the same severity of each symptom, etc. Some disabilities, syndromes, disorders and illnesses involve very, very similar symptoms and reactions to one another; like people with allergies, or those with acid reflux disorder. (My dad has allergies and I have acid reflux. They are very much common in every person who has them.) Autism is not like that.
To try to better understand autism, read the posts included in neurowonderful’s Autism Resources Page. It is wonderful.
Here is my own explanation of how symptoms of autism present for me and how they affect my life: (This is based on an excellent guide I found here)
A. Differences in perception (at least 3)
- Sensory defensiveness – Sensory defensiveness is basically a part of Sensory Processing Disorder, which is often a huge part of autism. I have it, but I don’t believe I was officially diagnosed ‘separately’ from autism. SPD can be many, many things but it essentially just means that our senses are sort of ‘mixed up.’ We often process things as being either ‘too intense’ or ‘not intense enough,’ and because of this, autistics often will either seek sensory input, or will be defensive toward sensory input (not want it). In the case of sensory defensiveness, it is like certain specific things are almost painful for me. One easy to explain example is food items. I come off as a picky eater because I have a lot of things I won’t eat, but there is a difference to me between foods I don’t like and foods I’m defensive of. If I don’t like a food, I don’t mind eating it, I just would prefer not to, such as carrots, turkey, pasta, etc. If I’m sensory defensive to a food, I sort of gag and my entire body basically tries to reject my eating it. It’s to the point where sometimes, I can’t look at the food, touch it in any way, or watch others eating it. Some of the foods I’m sensory defensive of include mayo, sour cream, and meat fat. I’m so sensory defensive of mayo and sour cream that I can’t wash someone else’s plate who has been eating one of these things, if it touched and rubbed off on the plate. I also can’t spread mayo or sour cream on a sandwich or platter for someone else, even if they ask nicely. Strangely enough, I am NOT sensory defensive to some mayo-products, such as Japanese spicy mayo, and I truly believe that helps me to understand and explain sensory defensiveness: I’m just particularly sensitive to the exact product that is mayo, but things that are similar to mayo don’t bother me, because it’s beyond just pickiness, it’s physically hard for me to endure. I am also sensory defensive to things besides food, such as LED and fluorescent lights, alarm clock noises, puking noises, and general repetitive noises (like a DVD menu playing over and over while I’m trying to sleep). Most people can understand sensory defensiveness to some extent, because it’s like “nails on a chalkboard” except it can be any sense and it can be something most people don’t feel strongly about or that some other people actually enjoy, like mayo.
- Sensory seeking – Sensory seeking behaviors are a big component of my autism. They’re the main reason it was ever discovered I might be autistic. Stimming, or self-stimulation, is when a person does certain physical motions to either calm down from too much sensory input, or to seek sensory input because they don’t have enough. Stimming occurs in people who are non-autistic as well, like common stimming behaviors such as pacing, leg shaking, playing with hair or a pencil. Stimming for autistics is often more extreme; the stim behaviors themselves may be “less socially acceptable,” and autistic people are often basically a mess if they aren’t allowed to stim. My common stims are flapping my hands and feet wildly, dances that I do, making peace signs, leg shaking, playing with objects that are nearby, playing with my hair, and playing with my necklace. The most satisfying stims for me are flapping and dancing, but they are also the ones that I have been socialized from childhood (by peers and educators mainly) not to do, and I have gotten to the point where I’m unable to do them in front of even the people I trust the most and I save them for when I’m alone. Most of what I do when I’m alone involves lots of stimming. For me, stimming is both a sensory seeking and a sensory defensive mechanism. I stim when I’m overwhelmed and have a hard day filled with stimuli, but I also stim when I’m ‘bored,’ excited, thrilled, etc. When I’m alone, I stim while reading, while writing, while thinking, while dancing, etc. When I’m with people, I try to keep it to a minimum of socially acceptable stims, and people who have class with me will notice I always fidget with something through class despite paying very good attention to what we’re doing.
- Auditory processing difficulties – This one is definitely huge for me. I have been tested many times and gotten a perfect hearing score, but I don’t process what I hear correctly a lot, or I don’t process it right away. The best way to describe this is that often, when someone asks a question or says something, I won’t get it right away, and I will ask, “What?” and then I’ll get it a few moments later and say, “Oh, okay.” This often results in people being angry that I ever asked “What” if I “knew what they meant anyway.” They don’t get that it’s just taken my brain a minute or a few to process what they said. I often process things totally wrong, too, and sometimes my brain replaces an earlier request for a newer one, like if someone says “Get me five gallons of milk – never mind, get me three.” My brain may be stuck on getting the five gallons, and that’s what I end up doing. To combat this, I write down everything I have to do when it comes to chores, work, and instructions of any kind, in case the person edits their original words. Sometimes, though, I don’t process something right the first time around, but most of the time this usually ends in something like a friend says, “Do I look like I have uneven eyebrows?” and I say, “Do you look like you have Steven’s cow bells? What?” and we both laugh. Most people don’t mind this one too much unless I’m dealing with a really impatient person.
- Unusual, awkward or delayed motor skills, or asymmetry between gross and fine motor skills – This was very present with me as a kid. I couldn’t climb the steps one foot at a time until fourth grade, couldn’t grip utensils or pencils right until fifth grade, went through intensive physical and occupational therapy, couldn’t write in cursive, couldn’t ride a bike, etc. It’s still an issue, and I actually still can’t ride a bike. I have dyspraxia, which is a part of my autism. You can look it up if interested.
- A reduced or lack of conscious awareness and/or use of non-autistic nonverbal behavior and communication such as facial expression, gesture, and posture – I don’t have this problem nearly as much anymore; I was mainly able to train myself out of this and understand through careful practice what it means when someone rolls an eye or is standing in the doorway trying to leave and I’m still talking. However, every once in a while it gets me, like if someone sighs and sounds frustrated, I may interpret this as angry at me when they are just tired or hungry. Many other autistics have said that, often, when they witness two people shouting and arguing, they feel as though they are being shouted at themselves when they aren’t. I’m like this, and I think it’s due to this.
B. Differences in cognition (at least 3, one of which must be 1 or 2)
Difficulty in beginning or ending (at least 1):
- Perseverative thoughts or behaviors – This is very true for me. It happens a lot with special interests (to be discussed later). It can also happen with behaviors such as cleaning or preparing things in a particular way. Perseverative behaviors in many ways resemble OCD, especially when combined with Sensory Processing Disorder. For example, if I start off a new room set-up by having my stuff set up in a particular way, it’ll be really hard for me to change that. If I keep my plates in rainbow order at the beginning, it’s hard to stop. If I never do fold a certain towel or something, I’ll never care. It’s not exact OCD or an exact science; it’s just very hard for me to change behaviors and thoughts without actively thinking about it.
- Needing prompts (visual, verbal, hand-over-hand, etc.) to begin or finish a task – I’ve been working on this one to make myself more efficient academically and in the workplace, and overall, but this is another reason I make to-do lists, because checking off that I’ve done something serves as a prompt to finish a task and begin the next one.
- Difficulties planning complex activities – I don’t have a problem with this criteria really, but that may be because I’ve been socialized to plan complex activities a lot, like juggling 14 people’s schedules to plan a party.
- Catatonia – I have an issue with this one, especially during an autistic meltdown/shutdown or during burnout (to be explained later). If I’m really engaged in something, especially a special interest but even just as simple as thinking deeply about a subject, I can remain in one (even seemingly uncomfortable) position for hours without remembering to move. This, combined with starting/finishing tasks, is why I sometimes forget I’m in the shower and end up in there for almost an hour. I try to remember to get out of there faster when I have roommates waiting to use the rest room.
- Difficulty switching between activities – Again, it’s just like starting or finishing a task. I’m like this a lot with switching between “types” of activities. I can often multitask or switch between activities if they’re of a similar nature, which makes me seem very spontaneous. I can switch between watching a movie with friends to driving to the mall with friends easily because both involve fun; but I have a hard time switching between writing an essay and watching a movie with friends. I need to feel my essay is totally wrapped up and done first.
- Lack of apparent startle response – I definitely have this. Sometimes I don’t even notice people are there. This one is most notable with body functions, though. Many autistics have said they sometimes forget to eat/drink or use the bathroom because they don’t really realize they have to. It’s a lack of interpreting the body’s response to hunger, or thirst, or something. I have this issue a lot of the time, and I often remind myself to eat or to go pee. It was a much larger problem as a child, when I would sometimes forget to pee until I was almost peeing my pants. If my hunger gets too strong, I will eventually notice it, also.
Difficulty in using language (at least 1):
- Problems with pronoun use that are developmentally inappropriate – I don’t have this issue
- A reduced or lack of awareness of tone in self (ie, speaks in a monotone, childish, or otherwise unusual manner) and/or others (ie, does not perceive sarcasm or follow implied prompts, responds to rhetorical statements and questions in earnest) – I have this issue to some degree. I don’t have the “classic” example of not getting sarcasm or rhetorical questions that is so, so often associated with autism/Asperger’s. I mostly have a lack of awareness in myself, not in others. I don’t realize my voice sounds “completely sad” when I’m in no way sad, etc. I don’t realize that my tone comes off as angry, or sarcastic, or mean when I didn’t in any way (even subconsciously) mean it to. It’s not me being passive aggressive; it’s just a lack of awareness of my tone. Sometimes other people think I’m secretly mad at them but I’m not at all.
- A reduced or lack of awareness of volume (ie, speaks too loud or too quietly for the situation) – Absolutely, every time. Huge issue of mine that speaks for itself. It speaks loudly for itself, haha.
- No functional language use – Not a problem I have.
- Echolalia – Echolalia is repetitive-type noises that are pretty much subconscious/unconscious responses. They may be noises, complete sentences or words. If you’ve ever heard someone repeat a phrase or a part of a phrase that you just said right after, that’s echolalia. (That form of echolalia actually drives me insane because my dad does it a lot.) My forms of echolalia are mainly cutesy noises and meowing. I will often meow at random without being conscious that I’m doing it.
- Mutism in some or all situations – I don’t usually have issues with mutism anymore, but as a child I did, especially the “in some situations” one. It was mostly associated with school when I was a kid, probably because people were harsh toward my autistic tendencies and I was often punished.
- At least one special interest in a topic that is unusual for any combination of intensity (i.e., does not want to learn/talk about anything else, collects all information about the topic) or subject matter (ie, unusual, obscure, or not considered age appropriate). Topics may be age appropriate and/or common (such as a popular television show or book), but the intensity of interest and/or specific behavior (such as collecting or organizing information as the primary focus) should be taken into account – Special interests are another hallmark of autism that everyone thinks of when they think of autism. Along with stimming, they’re one of the ways it’s easiest to “tell” that I have autism if you know anything about autism. Because special interests are a big part of autism for me, this will be a long section. If I describe some of my common special interests, it’ll be easier to explain what special interests are and how they differ from any old interest. My special interests currently are: reading, writing/story-telling, fantasy/supernatural-type worlds and their characters (can mean in books, TV, movies, etc.), jewelry, photo shoots, fashion, architecture, human behavior and keys. The way you can tell my special interests apart from other hobbies and interests is mostly in my intensity. I would say that it’s actually pretty hard for an outside TO tell, because I have been so traumatized by peers/society about many of my special interests that I’m either afraid to share the interest at all, or afraid to share my intensity for it. For example, one show that is a special interest for me is Gilmore Girls, my favorite television show to date. Almost everyone knows it is my favorite show and what couples on it I like and what my favorite season is. However, what makes it a special interest is that I’ve watched every season at least three times, and certain episodes up to ten times. I have written my own critical perspectives on things like sexism in the show, character development of certain characters, how the fandom interprets certain things, etc. I have read many, many other fans’ perspectives of things in the show. I have spent my own time thinking about characters and the things they have done or would do in a certain situation, and at times, have even pretended to be/channeled the personality of some of the characters, mainly Rory and Lorelai, who are my favorites obviously. I don’t do all of these things with every TV show I ever watch: only the few that fall into special interest category. Many of them are supernatural/fantasy based, like The Vampire Diaries (which I am in the process of watching for the second time in its entirety, something I do NOT do if it’s not a special interest show) but others like Shameless and Gilmore Girls interest me mostly because of my interests in story-telling and human behavior.
- More about special interests (it needed a second bullet) – My special interests, because they occupy so much of my heart and passion, are carefully guarded by me and I am very sensitive about them. If I’m pestered about my interest in watching anime, or my obsession with the perfect details of a photo shoot or particular photograph, I become very defensive and build another layer of basic defense for the next time it comes up. The more times that an interest has been the subject of some sort of trauma for me, mainly because of society’s inability to respect autistics and anyone who is different really, the less likely I am to speak about it openly again. As well, another thing about special interests is that they do change. I always have certain ones, but some I drop for a while and pick back up again, or never really pick up. Some I pick up for just a period of time and get “over them.” This is something that some autistics go through. As a child, I had special interests in gardening and cats, for example, that didn’t persist with the same intensity as I grew up. As a kid, I spent a lot of my time in gardens and inspecting gardens; I believe a lot of what draws me to be interested in architecture is what drew me to gardens. I also learned everything to know about cats, had a collection of cat figurines and apparel, pretended I was one in real life, and pretended I could communicate with cats. I still love cats and I have a huge soft spot for them, but I no longer feel the level of intensity I once did. I also still love gardens (especially secret gardens) but they are not still a special interest. Reading and story-telling, for example, have persisted throughout the years as special interests.
- Asymmetry of cognitive skills – This can include many things. For me, one area that seems to be impacted a lot is memory. My memory is very unreliable but also the types of things I remember is very random sometimes. I remember certain specific dates, but not others that are equally important.
- Talents in pattern recognition, including music, mathematics, specific language structures, puzzles, and art – I don’t have this with math, but I have it with language structures and definitely with language. I’m very good at recognizing certain patterns.
- A tendency to focus on details instead of the broader picture, across contexts – I have this issue, but I generally try very hard to work on not letting it run things for me. It definitely presents itself in terms of my ‘future planning skills,’ though.
Now to talk about a few autism myths.
One of the most common myths with autism is that autistic people are incapable of empathy. People believe that the reason we seem to not understand their feelings is because we’re incapable of empathy, when really, we could be struggling with getting their nonverbal cues, or understanding their tone of voice, or we could just be under a lot of sensory overload stress. I have spoken to many autistics and read a lot about this that was able to better explain it, but I can also tell you that I’m empathetic. I’m almost too empathetic; when someone I care about is sad, I’m sad. I may not be able to understand the exact situation they’re going through on a personal level, but I always look at things through everyone else’s perspective and can often see more than one person’s at a time when I’m looking at a conflict.
Another common myth is that autism and Asperger’s are different. If you identify as having Asperger’s and you want to refute this, I’m really sorry and that is fine. To better explain things, Asperger’s and autism used to be two distinct categories, usually separated by whether or not the person experienced language delays in early childhood, but they are currently NOT different from a diagnostic standpoint in the DSM. Autism is a part of a spectrum Autism Spectrum Disorders, and Asperger’s is no longer distinguished. Many professionals agree that people with autism who did/did not suffer a language delay have no need to be separated into two categories – it doesn’t change the treatment, it doesn’t really change how our autism affects us. From talking to many other people who were diagnosed with Asperger’s and reading their writing, I see no differences from the way people who were diagnosed with autism are affected by their disability. I had a language, reading and writing delay as a young child, but this isn’t imperative to my IQ, my abilities now or my life’s journey other than that it affects how my education was shaped early in childhood.
Not all people with autism are “idiot savants” (which is an ableist and awful term anyway). We don’t all have low IQs but then can tell you what day of the week any day from the dawn of time was. Like I’ve repeated, autism is a spectrum and even for people with autism who have low IQs, their IQ may or may not be affected by their autism. People with autism come from all intelligence areas and educational backgrounds.
In essence, autism is hard to understand, but yes, I want everyone to. I want you to ask questions, even anon if you’re scared, about how it feels to deal with a specific situation. Although I identify autism as a disability because of the way it has created struggles in our ableist society, I also genuinely feel I wouldn’t be me without my autism and that it’s not a separate part of me that I need saving from or need to eradicate or fix. It’s a part of who I am and how I think and respond and the person you love wouldn’t be here without autism. After years of struggling through traumatic experiences of ableism and mistreatment because of being autistic, I can genuinely say I love it.
And why love it? I’ll tell you why, in a nutshell. (Also read The Obsessive Joy of Autism if you have a chance.) Because, at the end of the day, I can honestly say that my autism and the way it affects me has given me great joy when nothing else can. There is no better feeling than stimming to some loud music in your room after a hard day at work, or finding relief in a special interest after a traumatic experience. When I’m feeling low, my autistic brain finds something new to gain interest in and grasp onto to save me. I know this isn’t true for everyone and that many people with autism also experience severe depression, but in my case, I generally feel that autism keeps me from depression. When I would normally just sink into a terrible place in life because of circumstance, autism reminds me about the Victorian houses I could look up photos of and the novels I could reread for new subtext.
This also brings me to why my autism caused me to be misdiagnosed as bipolar. While bipolar is commonly comorbid with autism (meaning lots of people have both), I’m not one of them. I didn’t fully understand what it mean to be autistic until last year. My medical files from childhood were all lost in 6th grade when there was a flood or something at my childhood doctor’s office. Only some things, like my vaccination records, were sent over. For that reason, I didn’t get a lot of attention to my autism during my later adolescent years, and also because people commonly think of autism as a childhood thing, and don’t look for it in tweens and teenagers and young adults.
Because of my lack of information of what it means to be autistic, especially in later years, I had no idea that a lot of the things that my counselor thought were symptoms of bipolar were actually traits of being autistic.
Here’s what went down, in simplest terms. I went through a period of extreme stress, mainly due to environmental changes like going off to college, living in a totally new town, and everything that comes with it. These kind of changes are hard for anyone, but for an autistic person they can feel like a personal attack – it can feel like the walls are closing in. Can you imagine not being able to eat certain foods because they hurt your senses literally, and they’re all over the required meal plan? Can you imagine being sensitive to a certain type of light, or to particular noises, and being stuck in a dormitory with little control over what your neighbors do or what the light sources are? It’s hell for an autistic, and a lot of the time is spent preparing alternatives for things that will cause issues for us. Because I had no clue what this all really meant, I didn’t realize I was having these issues so strongly. I had no ability to prepare myself mentally and physically for them – by buying earplugs, by bringing lamps, by preparing my own food instead. To top it all off, I had a rough time emotionally during this period for a few personal reasons, including fighting with loved ones and violations of trust. All of these things set me into autistic shutdown and autistic meltdowns.
They may sound the same, but autistic shutdowns and meltdowns are vastly different. However, they tend to come from the same place. What happens in an autistic shutdown is that an autistic person becomes exhausted by having to live in a world built for non-autistics, possibility hiding their natural behaviors, traits and speech patterns in order to fit in. Basically, because I acted “not autistic” for so long with no breaks, and no time to myself to “just be autistic” in my own space comfortably, I shut down. A shutdown is best explained in that the person’s autistic traits will often seem really pronounced, even if they aren’t normally. For me, that means that things that are often background become way more important and noticeable. I may be catatonic for hours and not leave the same spot at my desk. I may not notice I’m hungry or thirsty or need to pee. I may be extra bothered by noises, sounds, textures, and human contact. I may not try very hard to be communicative; my communication shuts down and I’m left with autopilot.
An autistic meltdown will often happen because an autistic person is dealing with extreme amounts of stress, whether they are from the environment or personal relationships. In my case, I dealt with both at once. A meltdown is what happens naturally when an autistic person can’t handle their stress and doesn’t know how to communicate their needs or may not even know what they need. In my case, I often scream, shout, push people away, cry, and need to be alone. I may just totally freak out about a specific thing I can’t control – like someone talking behind my back, or a bus not arriving on time – because it’s the kind of thing that autistics really hate. We have a hard time adapting to changes in the environment most of the time and we’re also notorious for not being able to articulate our needs. If too many stressful environmental things I can’t control are happening, I may meltdown instead of reacting rationally. I always try not to and to avoid meltdowns, but it took me understanding what they are and why they happen and how to use other coping skills to do this. What happens naturally is that I feel in a state of panic and fear whether or not the specific situation ACTUALLY makes me afraid or not. For example, if I were overhearing a girl talking about me behind my back, I probably wouldn’t be actually afraid. I would be angry, and maybe concerned about why she was saying those things. But the fear comes from the lack of ability to control the situation or to control my communication about it. Because I’m autistic, I would have a hard time articulating how being talked about made me feel, or a hard time asking the girl to stop (politely or more forcefully). So I would wind up in a panicked state, afraid instead of the natural emotions. I would end up in a meltdown.
I might scream. I might swear. I might try to curl up in a ball and cry. I might become catatonic, and refuse to move from the spot. I might try anything to get people to leave me alone. I might irrationally talk about controlling or fixing the situation, without any logical or rational actions (such as “I’ll go calmly ask her why she’s saying those things.”).
And I learned how to deal with these, but not until I was diagnosed wrongly as bipolar.
To a counselor who isn’t aware I’m autistic, or may not be looking for autism, I look like someone who could be bipolar. I’m at the age when bipolar often rears its head. My shutdowns can look like depression and my meltdowns can look like mania, either angry mania or scared mania or even ‘happy’ mania. They have similar appearances, but they don’t actually come from the same place. Even though my meltdowns look like mania that comes from nowhere, they’re not. They come from a place of sensory defensiveness, and defensiveness and resistance to change, and an inability to articulate my needs and feelings.
Another thing that can easily look like mania, in my opinion, is the obsessive, excitable side of autism that’s a big part of my life. I’ve always understood WHY counselors would mistake me as manic, but not why they would think I’m depressive. Most of the time in my life, I’m engaged in one or more special interests. I’m enthralled by them, and by life in general. I spend hours stimming in excitement over future plans, daydreaming, writing stories. Life is exciting, beautiful, wonderful. This is by no means true for all autistics, and many experience crippling depression, which is also comorbid with autism. Fortunately for me, I don’t have depression. But I also don’t have mania. I have many blessings from my autism. It gives me joy, and reasons to love life even when the people in my life are a disappointment. It provides me with deep special interests that capture my heart and an obsession for the details of life.
Being autistic is hard in a non-autistic world. It often means educating people about ableism and about what things I really do NEED – like quiet time when I’m trying to sleep, or to not eat certain foods. But it also comes with understanding myself and my limitations in a non-autistic world. There are many things I can’t avoid, including people talking about me behind my back and buses coming late. I try to come equipped with ways to handle things as they come along. I bring snacks with me to places where I’m not sure if food will bother me, I downloaded rain apps to my iPhone so I can listen to them while I try to sleep in noisier places.
But overall, despite the challenges that come with autism, I really am happy to be autistic. It’s who I AM. It’s not something that can be changed or taken out of the equation that is Alaina. I’m just as much autistic as I am bisexual, or a girl, or an ENFP or an only child or any other thing central to my identity that I can’t change that influences who I am. And I’m not unhappy with that, so nobody else should be either.