.Being.Us

TW: Psychiatric Medication I wrote this rough draft of a poem a few years ago for spoken word and never came back to edit it, but I really like it. To me, it represents finding the balance in my psychiatric medication and sort of losing myself by being over-medicated but losing my ability to maintain my relationships with people who matter to me by being under-medicated.     This is the time of day When the oceans roar The messy crash of salty waves is pain But the tearful surge is the herald of my reward   They're coming back My thoughts are riding on the clouds Where I used to live My wonderings crashing in the pattern of my name   Here comes the Storm   Boatless, I'm dead man's floating out to sea Will I go into that hurricane? Will I float until the waves lift me to the clouds, Not into the eye of the storm, but in the swirling winds?   The swirling of that storm is where I once discovered lightn...

In this blog post, I will respond to each point in the Autistic Self Advocacy Network 's (ASAN's) "About Autism" resource ( https://autisticadvocacy.org/about-asan/about-autism/ ). I will be responding to describe how autism affects me, personally. Every autistic person is different. Thinking of autism as a sliding scale from high-functioning to low-functioning is not accurate. Each autistic person experiences the differences in processing that come with autism at varying intensities for each category of difference (sensory, communication, structure and routine, etc.). Life and daily circumstances can also change the intensity with which these differences are felt. First, ASAN gives some facts about autism: "Autism is a neurological variation that occurs in about one percent of the population and is classified as a developmental disability. Although it may be more common than previously thought, it is not a new condition and exists in all parts of the world, ...

What Every Autistic Girl Wishes Her Parents Knew is a collection of essays edited by Emily Paige Ballou, Kristina Thomas, and Sharon daVanport. The tone of the essays is conversational, and they're directed at parents whose daughters have been diagnosed with autism. Nearly all, if not all, of the essays are written by actually autistic individuals. Reading it as an autistic individual, I found it an uplifting and edifying read, but I also found some parts of it a little triggering. The book is divided into the following sections: Preface, Foreword, Introduction, Early Memories, Childhood and Education, Gender Identity and Sexuality, Acceptance and Adaptation, Finding Community, Conclusion, Afterword, Contributors, and Notes. Most sections contain several essays. The Preface explains that parents often understand their autistic children more after talking to actually autistic people than after talking to many experts and that this book offers a diverse collection of autistic p...

Am I depressed? I told my psychiatrist I wasn't at my last appointment because there are things that can pierce through the haze of mental illness and make me feel alive- poetry mostly. I asked my friends and family if there are things that make them feel alive, and a lot of them had long lists: time with loved ones, hiking, making art, making music, cooking, playing with pets... I have one thing, but I'm so grateful to have that thing. If you have something that makes you feel alive, hold onto it, and if there are days where depression is so thick, your one thing barely makes a dent, do it anyway. It's your secret weapon in an invisible war. But I digress. I told my psychiatrist I wasn't depressed because I can enjoy poetry, and it can make me feel alive. I can also sometimes enjoy my other hobbies. However, upon further reflection, I think I must be depressed because I can't do anything. I sleep 16 hours a day, but is that from depression or because I have tr...

Become more functional Depend on friends for more appropriate things Have a better quality of life Those are my 3 primary goals right now, and I think they might resonate with other disabled folks. This isn't going to be a blog that tells you easy steps to achieve these goals. I can't tell you how to do something that I haven't done myself. I'm just going to talk about my situation and the steps I plan to take to try to accomplish these 3 things. Hopefully, some of what I write will be applicable to your situation, too. This quest started with a tough conversation with my roommate. She said that I cannot live independently, and it's been falling to her and my friends to pick up the slack in my ability to care for myself. They've been helping with household tasks, staying with me when I'm not safe to myself, communicating at appointments, picking up financial slack, and more. These duties should fall to professionals who are paid to do them, but, although ...

Over the last 2 years, you've demonstrated an inability to live independently when exerting your best effort. The burden is falling to your friends to fill in the gaps. We think you should consider a group home. That's what my care team told me recently, and it came as a blow. My roommate was the first to bring it up, as one of those friends who was feeling the weight of filling in the gaps in my ability to care for myself and my dog. My roommate is in her master's program for social work and works with people with autism for a living. When I brought her concerns to my counselor, my counselor agreed with her assessment- I need more supports. So now, my case manager and counselor are searching for good group homes that will take my ESA (emotional support animal) and I by June at the latest, since my lease is up in July. Meanwhile, my doctor has put in an order for nursing and aide care, but we don't know how long that will take to come through. I also set up a meeting...

Many holidays are coming up, and that means holiday gatherings. Holiday gatherings can be nice in that they allow us to see the people we love, but they can also bring crowds, unwanted physical contact, sensory overload, changes in routine, unscripted conversation, and other challenges that are especially irksome for autistic and mentally ill people (like me). This blog will cover some ways to address these issues and lessen their impact. Note: The dyslexic font add-ons aren't working right now, so this new font is accessible to me.  Don't pack in too many gatherings: Trying to do too much is a good way to get overwhelmed. Allow down-time to recharge between gatherings.  Know what to expect : Knowing what will happen and when can help reduce anxiety. It can help to know the schedule, familiarize yourself with the places you'll be going (drive-bys or photos help me), and know who you'll be seeing at the events.  Prepare scripts : Whether you'll be going for a ...

Mental illness makes it hard for me to tell what's going on with my body. I seem to demonstrate a complete inability to conceptualize time, which may be more related to autism than mental illness, which makes recounting my symptoms to a doctor difficult. I also have trouble recalling feelings, physical or emotional, when I'm not feeling them right that moment. If I don't think to write them down when I experience them, I may not realize later that I have ever experienced them at all. Additionally, I have trouble grasping what has and has not happened. I may have a splitting headache on Wednesday, but by Friday, I'm second-guessing myself so much, I'm lucky to be sure that I had a head on Wednesday. I also used to deal with a tendency to find my identity in and obsess on new medical diagnoses, but this is a thought pattern that I am better , although not perfect, at keeping under control now. As a chronically ill person, it's important for me to be in t...

As a chronically ill person, I spend a lot of time at doctor's appointments, and, as a chronically ill, autistic, and mentally ill person, I find them overwhelming and draining. I want to talk about some of the things I do to make them easier for myself. Use mobility aids - If you use mobility aids, and your doctor is understanding about it, they can make the trip a lot easier. One mobility aid I use is forearm crutches.   Make visit notes ahead-of-time - I try to make my notes complete enough that I can hand them to the doctor if I'm having trouble with verbal communication. I take notes in my planner.   Present accommodation needs in writing- Carry a printed report of your accommodation needs to each appointment, and present one to each doctor's office to have on file. Discuss it with your doctor. Use an AAC program - Personal Favorites are Talk for Me for laptop and tablet and Speech Assistant for mobile. These are good if you prefer text-based AAC. I use Let Me ...

 For many autistic people, grocery shopping is an overwhelming and stressful experience. I'm an autistic adult, want to share some of the things I do to make the experience easier for myself. Bring a trusted friend : I grocery shop with my aide and my service dog, and they help guide me through the maze of colors and lights, keep track of how much I am spending, and make sure I don't forget anything.  Wear noise-cancelling devices : The sounds in a grocery store are super overwhelming. There's the buzzing of the lights, the people, the beeping of the checkout, the music, the carts, the refrigerators, and so much more. Block them out with earplugs; noise cancelling headphones; or my personal favorite, Ear Peace . Wear a mask : The grocery store is full of smells that can be unpleasant or overwhelming, not to mention trigger co-morbid conditions like asthma or migraines. A mask can help with this. I'm personally about to try Vogmask , since I've been having se...

I see a lot of articles written by neurotypical people trying to explain head banging and other self-injurious behavior in autistic children, and I want to offer my own perspective as an autistic adult who still engages in these behaviors. There are a number of reasons and circumstances that lead to self-harming behaviors for me, despite my efforts to avoid doing them. Sensory input needs not being fulfilled: Sometimes, self-injurious behaviors feel good. I like the pressure of hitting my head or the tingling sensation of scratching my skin, even though I don't like pain. I seem to process these sensations differently than neurotypical people. I've been able to reduce these behaviors by finding similar sensory inputs: body brushes instead of scratching, weighted blankets and lap pads instead of hitting, deep pressure therapy, etc. Too much being demanded : When a task or person places demands that cause distress that exceeds my normal coping skills, these behaviors result....

I used to be very religious. I've talked about it before. I was Bible-thumping, evangelizing on the subway, spending all my time in churches, memorizing the Bible, all-in, 100% religious, and there's nothing inherently wrong with that. Not everyone who is religious is judgemental, or mentally ill, or prone to black-and-white thinking, but I was all of those things. You see, being very religious didn't make my mental illness go away. One big symptom of my mental illness is trouble grasping reality, and, being immersed in the Christian religion, I used the Bible as a guide for what was real and what wasn't. This means that I lived in a reality where I heard God, angels, and demons, and saw them too, and I didn't seek help because I thought my experiences were real and literal. Autism isn't a mental illness, but it leads to black-and-white thinking for me. During this time period, I didn't think I was allowed to have a personality or interests outside of my...

First of all, let me introduce you to Coco . She's my 1-and-a-half-year-old service dog in training, and she's the light of my life     Even at her current level of training, she's made a huge difference in my life. It's possible for me to go outside now, or even to run to the nearby store for 1-2 items. I know when my asthma is acting up in time to properly medicate and avoid hospitalizations. She stops me from hurting myself by actively interrupting those behaviors and providing alternative stimulation. She helps with so many little things every day. Still, she's not fully-trained. Her biggest barriers are jumping on people who enter our home, her prey drive on walks, and chewing. She's also having trouble mastering retrieval. To be fair, the jumping and chewing are completely resolved when she's getting enough exercise, but, running at my maximum possible level doesn't give her what she needs in that department. Recently, I resolved to become ...

There's no thermometer for mental illness. When a symptom is concerning me, I can't get a CT scan to determine what degree of intervention is needed for the injury or illness. I have to use my better judgement, and, since mental illness and my better judgement are both in my mind, that's not the most reliable. Sometimes, I underestimate the severity of a symptom, and I end up hurting myself or doing unusual things, like drawing strings of letters on our doors and light switches to "keep the monsters out." People get upset with me for not seeking professional help soon enough in these instances. Other times, though, a symptom concerns me, and I opt to go to the hospital, where I'm told I'm "borderline" or "attention seeking," which I'm not. I'm there for a very specific symptom, and since my psychiatrist's office doesn't have urgent appointments, I have to either tough it out for a long time or seek emergency care. Th...

This is a vent blog, but maybe it will give some insight into the types of changes that are hard as an autistic person: This week has been a barrage of change. I notice the tiny changes that I'm told allistics don't notice, and there were also a lot of bigger changes. First, I got a new student, which is a pretty common change; it happens about every 6 weeks. Then, I tried to do a lesson with an existing student, but our software wouldn’t work. Work told me the software had permanently discontinued service to our company, and I had to download and learn a new software, so I did. Several days later, though, they told me that the original software had been reinstated. This week, 4 lessons got rescheduled by students, my roommate was coming and going on a new schedule, and I was sleeping on a new bed. I started a new major project for work, and service techs came with noisy drills and disrupted my routines. I'm working way more hours than I can handle, and it's t...

I used to be really interested in religion. I was obsessively, devoutly, wholeheartedly religious. This blog might not be very well-written, because I've only recently started trying to put this to words, but I'm going to try to explain why I'm not so religious, anymore.  I converted to Christianity when I was 15, and in my autistic, all-or-nothing way, I was all-in. If this religion was true, in my mind, every word of it was true. My near-eidetic memory for text allowed me to memorize many parts of the Bible quite quickly. I was 15, an age when it's normal to think a lot about higher powers, life's meaning, and humanity's place in the world, and I had a lot of questions. Since the Bible said God talked to people, I asked these questions primarily directly to God. In order to believe Christianity wholeheartedly, I had to "turn off" a certain part of my mind. Theologians might call this suspension of disbelief, and psychologists call it allowing ...

Dear unnamed friend, I carefully hoarded enough spoons to do the activity you suggested at the time you suggested. I went to bed super early and planned NOTHING for tomorrow to be able to do it. I just got discharged from psych this week, and the meds still aren’t all the way in my system, so I’m foggy-minded and emotional. I also woke up every 90 minutes last night for 30-45 minutes due to nightmares about the hospital that joined my normal nightmares. I told you I’d let you know around 9am today, when my alarm was set to sound, whether I could come to the 1pm event today, and I texted you that yes, I could come, but I needed to sleep until 10 to regain spoons. You texted me 4-5 times between 9:15 and 10, effectively cancelling any change I had to sleep, since it takes me at least 2 hours to wake all the way up. You tried to change the plans to pick me up around 10:15am, and I understand why. You were already in the area for something and didn’t want to drive all the w...

CW: Involuntary psychiatric hospital commitment, details of hallucinations and delusions So, I want to update everyone on my psych situation. I don't know if this will be a positive or a negative post. It may be a little disjointed. If I start talking about something and realize that explaining it is putting me in a bad head space, I'm just going to end the paragraph mid-thought and move on to the next part. I went to the hospital this week because my anti-psychotic, Seroquel wasn't working. I was having simple auditory and visual hallucinations, as well as delusions that were much more immersive than usual. It turns out that Seroquel often doesn't work for autistic people (like me). At first, the delusions started out disjointed, which is more normal for me. In the first couple of days of the psychotic episode, I thought all of these things (copied from my Tumblr ), but not simultaneously: That my neighbors were monsters and that there was a monster trapped ...

Often, when people find out I deal with mental illness , chronic illness, or autism , they express how sorry they are. This feels strange, like I'm defective in some way, and they wish they could change me, like I'm not loveable as I am. I know that's not what they're trying to express. Sometimes, I do wish I could change me. Mental illness is especially hard. Even though I know there's no shame in having a mental illness, and it's not something I can overcome by sheer willpower, sometimes, I feel ashamed not to be able to will it away. There are days when, no matter how hard I try, I cannot do the very important things that need done, and the only block is an illness in my own mind. There are nights when I cannot logic away delusions or talk down paranoia enough to take my dog out. There are times when I do things during a mental health episode that I come to regret later. This all gets even harder to judge with chronic physical illnesses and autism mixed in;...

People with vision disorders often have a sort of sixth sense that enables them to tell when something is in front of them. This sense can be developed intentionally over time in sighted people, as well. The sensation is something like feeling the object in front of your face as a force. Scientists say that we are actually using echos and sounds to locate things when we perceive distance that way. Although I am by no means blind, I have some vision disorders, as well as headaches that come with extreme light sensitivity, and I have developed this sense over time. That's actually really cool, but it does create some different needs for me regarding personal space when coupled with autism, PTSD, and anxiety. For me, autism means experiencing things around me more intensely than neurotypical people do. Specifically, I'm more aware/hyperaware of things near me because my brain does not “tune out” or “filter” sensory input to select what’s important very well. Also, my feeling of ...