Autism Spectrum Disorder

Autism is a type of neurodiversity associated with characteristics like passionate interest in specific topics, difficulty with typical communication methods, sensory sensitivities, and using repetitive motions (sometimes called stimming) to regulate their experience. There has been so much discussion in the disability community, especially in the autistic community, about functioning labels. That’s why Tumblr user levianta created a set of five images to explain what we mean when we say autism is on a spectrum. Below, I’ve included the images, as well as an explanation of what each means to me as an autistic person. Autism has always been perceived as a spectrum. When most people think of a spectrum, they think of the graphic below — a horizontal line that runs from “low-functioning” to “high-functioning.” Everybody is supposed to fit neatly in their own dot on the spectrum. But, that’s not how it works at all. The second graphic is something that is becoming more common in the neurodiversity world. It illustrates how we can be very functioning in some ways and not as much in others. The characteristics reflected in this diagram include depression, fixations, abnormal/flat speech, noise sensitivity, social difficulty, anxiety, abnormal posture, poor eye contact, tics and fidgets and aggression. With this graphic, everyone can map their own personal spectrum. I love this set of graphics. I have been labeled “high-functioning.” I’ve been stuck on the far right end of the linear spectrum by professionals and government agencies my whole life. I present very neurotypically at appointments and interviews, so much so that I have been denied services I desperately need. I struggle in so many areas. My current mental state right now proves that more than ever. I’m suffering from one of the most severe burnouts in my life, purely because I try to live up to the label of “high-functioning” every day. It is something I have been coached and trained to do and something society expects of me. I am very lucky to have an amazing support system, but masking is wreaking havoc on my life. If I mapped my own autism based on this graphic, I would say I’m “higher functioning” on the verbal and social skills side of the map, but pretty low on things like anxiety and sensory issues. The third image (pictured below) says, “No two autistic people are exactly alike, but we shouldn’t be reduced to ‘high-functioning’ and ‘low-functioning’ stereotypes either,” and includes two different wheels with different skills and struggles highlighted. The first wheel represents Tumblr user levianta‘s autism, and the second wheel represents their brother’s. Below both wheels it says, “we have the same ‘amount’ of autism, just different symptoms.”   It’s worth mentioning that autism is sometimes listed as a “disorder” with “symptoms” in medical definitions, but it is not something that needs “fixing.” People on the spectrum simply experience the world differently than typical people. Even still, I loved this part of the graphic because I had never thought about autism that way, but that’s how I’ll view it from now on. I have often felt that I wasn’t “autistic enough,” except maybe on my bad days. My spouse and I would even call those my autistic days. It was freeing to realize that every day was an autistic day. Just because I was stimming a lot, did not me I had a bad or difficult day. It’s taking a lot of work, but I can let myself be autistic in public and around people. And being autistic equals being myself. The next image says: “the spectrum doesn’t look like this” with four people lined up, gradually becoming redder (symbolizing the “more autistic” idea mentioned above), while the final image says “we are far more,” with four technicolor people lined up (symbolizing how different every autistic person can be!). These graphics are so important because they empower autistic people who are considered “high-functioning” and “low-functioning.” I think we often base our functioning levels on whether you are verbal or not. But there are people who can’t communicate in a traditional way that do things like go to college, which I don’t have the capacity to do. People who are considered “lower functioning” can achieve things I could only dream of. By labeling us on a straight line, it hurts the people who can’t live up to their label and dismisses the talents and skills of those who are considered “lower-functioning.” Let’s empower every autistic person!

After Richard Bagby was paralyzed due to a spinal cord injury 13 years ago, he wondered how he would be able to live independently. First, there were the practical aspects of adjusting to his new physical abilities, and then he faced a new financial reality. Richard depends on state and federal programs that require him to have less than $2000 in the bank and limit how much he can save. How could he possibly afford to live independently, care for his service dog, and prepare for the future? Millions of Americans with disabilities struggle with questions like these each year. In the past, unless they had the resources to set up and maintain a special needs trust, people with disabilities who needed support from government programs were limited in the amount they could save or invest. But now, those who became disabled before age 26 have another option. ABLEnow accounts allow people with disabilities to save and invest without losing essential benefits such as Medicaid and Supplemental Security Income (SSI.) In 2014, Congress passed the Achieving a Better Life Experience Act, (ABLE Act), which provided for the creation of tax-advantaged savings accounts for people with disabilities. Up to $16,000 can be contributed to an ABLEnow account per year (or more via the ABLE to Work Act if the individual with a disability is employed). Any American who developed a disability before age 26 is eligible to open an account. An Authorized Representative such as a parent or legal guardian can open an account for a child with a disability or an adult who cannot manage the fund themselves. ABLEnow account owners can save their own money, and friends and family can also contribute. Funds deposited into an ABLEnow account can be spent on “qualified disability expenses.” Determining what counts as a qualified expense might sound complicated at first, but it isn’t. Qualified disability expenses include basic living expenses such as utility bills, housing, medical treatments, insurance co-pays, transportation costs such as a bus pass or payments on an accessible vehicle, college or training programs, assistive technology, legal fees, service dog expenses, and more. ABLEnow accounts include a debit card to make paying for qualified disability expenses as quick and simple as it would be with a standard bank account. Many government programs require hours of paperwork and months of waiting, but opening an ABLEnow account is easier than you may expect. You can enroll online in just a few minutes. The biggest barrier to setting up an ABLEnow account is lack of awareness — many people with disabilities and their loved ones don’t know this program exists or realize how helpful it can be. ABLEnow is helping to change that by providing a simple, accessible website that makes it easy to get started. Customers can manage their account with ABLEnow’s online tools and top-rated mobile app. An ABLEnow account can help families plan a more secure future for their child with a disability and empower adults with disabilities to live more independently. Learn if you or someone you know is eligible at ABLEnow.com . Disclosure Call 1-844-NOW-ABLE or visit ABLEnow.com to obtain information on the program. Seek the advice of a professional concerning any financial, tax, legal or federal or state benefit implications related to opening and maintaining an ABLEnow account. Participating in ABLEnow involves investment risk including the possible loss of principal. ABLEnow is administered by Virginia College Savings Plan. For non-Virginia residents: other states may sponsor an ABLE plan that offers state tax or other benefits not available through ABLEnow. ©2022 Virginia College Savings Plan. All Rights Reserved.

If you have read online about autism and neurodiversity as a whole on Instagram, TikTok and other social media and online platforms, you may see that self-diagnosis is considered valid and accepted… and by that, I mean accepted as an identity, with the concept of labeling yourself as being Autistic in order to better explain who you are as acceptable. Valid. This is something I didn’t immediately understand. Why wouldn’t someone get a diagnosis? Well, there are a number of reasons. Here are some of the most common ones I have read: 1. Getting a full autism spectrum disorder diagnosis, including an IQ test and interview, is very expensive and/or may have long wait times. 2. Females and those assigned female at birth are particularly less likely to receive an accurate diagnosis. They are often misdiagnosed with a different condition or nothing at all — just labeled as “sensitive.” This is because the current DSM-5 criteria for autism are based mostly on boys (this is also true for ADHD). That being said, there is no one specific way to be Autistic — anyone can have any presentation. My point is that presentation varies widely from what is in the current DSM. Some may ask, is being Autistic just a trend? Something cool to say? A way to be different? But that’s the point, isn’t it? We (yes, I say we, as I feel I am part of this community) already grew up feeling different, unusual, odd, out of sync. We don’t want to be different necessarily — if anything, the opposite is true! When we realize we are Autistic, it validates our lived experiences, which oftentimes come with traumas like bullying, abuse, or neglect. Why am I so passionately writing this article, you may ask? Well, you may have guessed it — indeed I do self-identify/have self-diagnosed myself as being Autistic. I made this realization for many reasons, all of which may be too much for one article, but will certainly be something I write about going forward! But… but Kelly, you’re so social? But… you’re not that awkward? Kelly… I’ve never noticed you having a meltdown before? Well, wouldn’t we call those stereotypes? And second, one of the reasons many individuals are diagnosed later in life (if at all) is because of masking. Many Autistic people mask, or hide, their struggles. So sure, I may seem one way on the outside, but that is not truly indicative of what is on the inside. Not to mention the above comments would be stereotypes! Some stereotypes I’d like to squash: If you are Autistic, that means you are an introvert; you can’t be an extravert. FALSE. If you are Autistic, that means you are incapable of making eye contact or having close friends. FALSE. If you are Autistic, that means you are either “really Autistic” or “mildly Autistic.” FALSE. And so, so many more. I am Autistic because I have had lifelong struggles with social interactions; only I started to mask more as I got older. Fitting in has never been easy for me; I’ve always felt out of sync or like an alien. I am extremely sensitive, both emotionally and in a sensory processing sense. I struggle with attention and executive function. I can’t multitask. I had many developmental delays, including some that I never caught up to (I am an adult now!). I struggle with motor coordination. I tend to ramble. I have special interests and hyperfixations. I am drained easily by the stimuli around me. I have meltdowns, many of which are quiet or even silent, as I’ve written about previously. I don’t always notice when I’ve started to bore someone/monopolized the conversation. My processing speed is slow. I have learning disabilities, ADHD, anxiety, and depression, like many Autistics. I also have trauma from growing up undiagnosed. I struggle with handling changes and transitions, big or small. I am not flexible, often rigid in my thinking. I have low frustration tolerance. Mental pain is a much bigger deal to me than most physical pains. I struggle with eating at times because of sensory issues. I don’t understand sarcasm well and take things literally. And the list goes on… And just because these traits are part of my autism, it doesn’t mean someone else who is completely different is not also autistic. Once you’ve met one Autistic person, you’ve met one Autistic person. In other words, there is so much great and beautiful variation in this neurotype, one that can also be a challenging disability. So, whether you are diagnosed by a doctor or psychologist and able to receive official services, or you have self-diagnosed, you are valid. Totally and completely valid! I am Autistic and with that, I am slowly figuring out who I am as I battle mental illness, process trauma, and embrace my neurodivergent identity. I think I like who I am, even if it isn’t always easy or understood.

Stimming is a necessity in the lives of many neurodiverse people — including autistic people, people with ADHD and those with anxiety. Everybody stims in some way or another. I love having easily accessible wearable stim toys and things for my sensory needs with me at all times. There have been many times when I start to feel overwhelmed, need to release excess energy, or just feel the need to stim, and digging around in my bag for a stim toy is just too much for me. Wearing a stim toy means it can be fidgeted with throughout the day, it can be discreet in workplaces and school, and it can help with accessibility during meltdowns. Plus they look super cute! Here are some ideas for wearable stim objects or toys: 1. Mindfulness Fidget Bracelet Old Soul Project Bracelets are perfect for fidgeting, mindfulness, and help regulate the stress from overstimulation and under-stimulation that people with ADHD and/or on the autism spectrum often experience. The bracelet comes with ideas for exercises and ways to stim with the bracelet. Their site is also full of how-tos and great information. 2. Push Pop Fidget Bracelet I love those push pop fidget toys but I never have them handy when I need them. I love the idea of having a push pop bracelet on my wrist that’s easily accessible. You can find these in all sorts of colors and styles on Amazon. 3. Fidget Necklace Have you ever worn a necklace and played with it? Well, some necklaces are specifically designed for stimming. Check out Stimtastic’s stim jewelry collection. Their Concentric Circles Necklace has three different beads that spin independently of each other you can roll or spin just one or all three together. 4. Fidget Key Rings Having stim toys that you can easily access on your keys is perfect for autistic and neurodivergent people to use while out and about. There are push pops, pea poppers, and gear shifters that you can put on your key rings. Plus keyrings can be pretty fun to fidget with. 5. Chewable Jewelry Many autistic and other neurodiverse people stim through chewing on things. This can be chewing on their fingernails, clothes, etc. Having a chew necklace can be a great way to stim and stop destroying our nails and favorite t-shirts. One of my favorite companies is Chewelry. You can usually find their products on Amazon. Stimtastic also has some great chew necklaces. Most companies have different textures and hardness; you might want to try a couple of different variations out and decide what you like. 6. Spinner Rings Spinner rings are really popular for anxiety, but are great for fidgeting and stimming for other reasons as well, such as ADHD and autism. I wear a lot of rings and I often find myself fidgeting with them. You can find spinner rings on Amazon and beautiful handmade spinner rings on Etsy like this one from BlackFeatherDesignUK. 7. Hair Ties If you have long hair, you probably always have a hair tie with you. Hair ties can be a wearable stim. Phone cord hair ties can be good for this because of the texture, and they’re fun to fidget with. However, everyone has their likes and dislikes with texture. Try them out to find out what feels best to you. 8. Bonus — Earplugs While earplugs are not necessarily stim toys, they are a great thing to always have with you for sensory issues. You can attach earplugs to a key chain or (as I’ve seen some people on TikTok creatively do with their loop earplugs),  make them into earrings.

Autistic shutdowns happen when life starts to get too much for us. We’ve overwhelmed our processing skills and our brains begin to close down certain systems to preserve energy. Open too many windows on your computer, and you’ll find that everything starts to run slowly, the mouse might freeze and all that’s left is to give your computer a full shutdown and restart — after which it’ll act like nothing’s happened. Computers do this regardless of how important the work you were doing was, or what crucial point you were at in your game, or whether you did or didn’t hit save first. I’ve been autistic all my life, and must have had countless shutdowns as a kid. But the one that really mattered happened at age 16 — the age where expectations about my behavior shifted very quickly. What might have been brushed off as childish or impulsive behavior in a younger teen started to get weird for other people. I began to learn that as an adult, many people find who I am completely unacceptable. I’d started dating a guy I was really taken with, and we were at a party with some of my friends. The boy in question later turned completely physically abusive, but he started out with little tricks. In this instance, it was telling me that one of my friends had told him that I was nothing but an attention-seeking weirdo (they hadn’t actually said any of this), and that he should break up with me. He told me that he was considering it. Why he decided to raise this at a party I have no idea, but we decided to go for a walk and talk about it. It turned into an argument that was way beyond my social capabilities — I can’t function with conflict. And so I just sat down, in the middle of the pavement, started rocking and said nothing. Shutdowns are my way of conserving my remaining processing skills and rebooting myself. Usually, a shutdown doesn’t last too long. I’m still able to hear, comprehend and see while I’m having a shutdown. But talking is one of the most complex things my brain does, and so just like you may not be able to analyze a marketing report when you get very upset (I can), I can’t talk when I get worked up. As I can’t regulate my emotions very easily, talking plus conflict plus general burnout will result in either a shutdown or a meltdown. So what was this boy’s reaction when I had this shutdown? Complete fury. “See! You are an attention seeker!” and stormed off, leaving me, a 16-year-old autistic girl, completely alone in the street, unable to speak. Shutdowns can seem like diva behavior at best and like we’ve completely lost our minds at worst. Some people find them manipulative. Our minds are still physically present, but because we can’t make eye contact or respond, it seems like we’ve gone mentally AWOL. We may be able to do some talking, but it might be nonsense. I suppose to the untrained eye, shutdowns can seem outright theatrical. The fact that I’m usually mostly fine about 30 minutes later, just a bit shaken up, adds to the suspicion around undiagnosed autistic behavior. From my perspective, I am seriously unwell when this happens, I’m at my most vulnerable and require support. Some terrible things have happened to me whilst I’m having a shutdown and I’ve been unable to protect myself. The trigger of the shutdown doesn’t need to be a huge thing, like a conflict, either. It could be something very simple and inconsequential to people around us. Maybe we missed a bus, or can’t find our phone. I’ve heard people talk about autistics like we’re super dramatic for getting so destroyed about such little things, but this is unfair. Small things can set anybody off if they’re feeling mentally unwell enough. Say for example you’re grieving a loved one, and you’ve managed to keep it together and it’s your first day back at work. You go to print off a document and the printer breaks, you start to cry. Everybody knows you aren’t really crying about the printer — you’re crying because you’re feeling extremely emotionally fragile due to your loss. This is something humans generally understand, but autistic people often aren’t afforded this compassion when we get upset about the little things, because nobody sees the private battle we face every day when we face those thousand little things. They just see our demands and anger when our routine changes, or our dramatic meltdowns because there is nothing we want to eat in the supermarket. I can’t recognize faces or read facial expressions. I can never “read between the lines” of a conversation, and although I say what I mean and never have an underlying message, people never seem to take me at face value. Socializing is scary and unpredictable to me, and so when things I can usually predict change suddenly, it feels like the last straw. I’ve seen neurotypical people get very upset when they’re around a sensory aggravation, such as if they have a noisy neighbor whose footsteps can be heard at all times of the day. It can make them flat-out angry and act out. Most of the time when autistics are dealing with sensory disturbances, we try to keep it to ourselves. But if we’re feeling burnt out, exhausted, upset and then something awful happens to our senses (for me it’s getting crumbs or bits of dirt stuck to the bottom of my feet, or touching something that’s too dry) of course it’s going to make us react! There’s stuff going on in our day-to-day that others don’t see, sometimes because we aren’t the best at explaining or letting other people into our world. I can tell when I’m approaching a shutdown or meltdown. I call it autistic burnout. I’ve had too much negative sensory experience, too much social stress, and maybe other stuff is happening too. Talking starts to feel like wading through a swamp and all I want to do is get some alone time and reboot, but I can’t — as adult life rarely affords anyone that, autistic or not. Rebooting for autistic people might involve some things that would actually burn out other people, such as deep research or work. If we aren’t able to retreat and give our minds what they need, and we drag ourselves to a family party or to the supermarket, the consequences of that may be a shutdown or meltdown. Autistic people need protection when we’re having a shutdown. The public should be able to recognize an autistic shutdown and so should the police and social workers. I have been arrested for having a shutdown — seriously, I got thrown in jail overnight. (They said that I was drunk, and I was, but are autistic people not allowed to drink?) If you’re with someone who is having a shutdown, don’t try and make them respond with eye contact or words. Just allow them to be shut down and know that it will be over soon. It’s OK to say “Oh, you’re having a shutdown? That’s fine, I’ll wait here with you, just let me know when you’re ready to get started again and we’ll go home.” You don’t need to make them snap out of it. They may be able to use speech apps or write if they can’t verbally communicate, or nod yes or no. They will be aware of everything around them, so if people are standing by watching and saying humiliating things, try and protect the autistic person from that. I’m sure you can imagine that it’s really hard to hear someone say derogatory things about you and have no way of defending yourself. Maybe ask the person if they are able to move to somewhere where you’ll have more privacy. If you’re embarrassed, it’s likely that your autistic friend is embarrassed too and isn’t intentionally trying to humiliate you or themselves. Shouting and screaming at the autistic person will only make things worse. An autistic person sitting down silently with someone else sitting next to them doesn’t look too weird, although it might seem out of place. An autistic person screaming and rocking while you berate them will draw attention to you, and people may rightly recognize you as an aggressor towards a vulnerable person and they may intervene. Autistics don’t have shutdowns to try and ruin your birthday party, or to get attention, or to scare off your client. We can’t help when and where we experience a shutdown. Also know that if you were having an emotionally distressing experience, it’s likely that we would support you, and we really deserve the same support, because we get treated very badly in a lot of circumstances. We desperately need a break. So if you’ve read this whole article and have decided to recognize and support autistic shutdowns if and when they happen — thank you so much!

My depressive episodes and my autistic burnout episodes are two completely different things, although it did take quite a while to figure out that they were two separate entities. When I was younger, they blurred together a lot. I wasn’t able to verbalize the difference until recently. In my depressive episodes, all I want to do is sleep. Napping is the perfect way to diminish hours until it is time to go to bed again. I cry so much, usually loud gasping sobs. I also will talk to myself while crying, mostly nonsensical sentences. With burnout, I basically become paralyzed. During burnout, all I can do is sit somewhere and stare off into space. I don’t even feel like sleeping. I just become non-verbal and stare at the wall until a human comes along and tries to snap me out of it, although I am not always able to. If I’m by myself, it’s even worse, because I just have to sit there, waiting for it to be over. It’s like my meat puppet is there, but my soul is gone. I am able to cry, but it is usually just silent tears running down my face. Burnout is one of the scariest parts of being autistic, for me. It is terrifying being unable to even twitch a finger. There are differences in what causes the depression or burnout. I feel like my depression is more of a mental state and my burnout is when I just completely shut down. My burnout occurs most when I am done trying to exist in the scary human world and need a break. It happens a lot when I feel lonely or when I am going through a PTSD experience involving my abusive parents or ex-spouse. It also correlates a lot to when I feel like my social skills are inadequate and that no one will ever want to interact with me. One thing that is the same in both burnout and depression is the mean voice in my head. It is a constant litany of self-hate that enjoys reaching into the deepest depths of my mind to find whatever material it can use. The mean voice delights in bringing up whatever is necessary to keep me in a state of misery. Another similarity is the urge to kill myself. Both depression and burnout hurt a lot physically and mentally and my usually passive suicidal thoughts take a turn for the worse. The last thing they have in common is the occasional yo-yo effect. I will find myself being terribly upset one moment, better the next, and right back into the sadness. That makes it even harder to cope, because I never know what or when is happening next. There aren’t many tips I can give for dealing with either depression or burnout, other than to just try and get through it. I have made plans while in a good state of mind as to what to do if burnout or depression strikes. I have a list of activities, such as knitting and reading, and a list of people I can go to if I need help. I tell myself a lot that each minute that passes is another minute you managed to survive. It might be the smallest triumph, but at least it is a triumph.