Hi blogging friends, I’m still here! I’ve been quite busy, and though I’ve had many ideas for posts, I simply haven’t had the time/energy to sit and write.
To get things rolling again, I’d like to talk a little about some of the reasons I’ve been so busy. I’ve mentioned before that I have been taking online classes. This summer, I got a full-time internship while taking 2 classes. Combine the stress of getting up early and working full days at a brand-new environment (with new norms and new responsibilities and new people) with taking two writing-intensive classes as a perfectionist (I take forever on writing assignments) and I was STRESSED. I was really on the verge of a breakdown multiple times. Mom told me she was ready to kill me once, and Dad had to talk her down. I had no down-time for relaxing with a favorite show or working on a sewing project or visiting my best friend. That isn’t healthy for me.
IT intern life.
But. . . this internship is the one that a guy at church told me about a year before, and I had really hoped to get. Not only was it an excellent learning experience, but it is leading to full-time employment. I’m amazed at how much better this workplace and work are for me. My confidence and self-esteem are slowly being built back up. I’ve joked before that in making this career change, “I’ll still be working with autistic people – they’ll just be my coworkers instead of clients.” It turns out, my years of hard work at practicing social skills and having to teach them to kids have paid off. In this field, I actually stand out as having good social skills, instead of other fields where I’ve been surrounded by NTs and been the “weird” one in a bad way. It’s all relative.
A grown man (with grey hair) built a fort. A box fort. At his cubicle.
Not only am I surrounded by people who get my geeky references, quote the same kinds of shows/movies, and appreciate a good special interest. . . but I can bring sensory objects to work for myself, and instead of getting weird looks I get jealous ones!
Personalizing my cubicle – complete with a visual stim toy!
I brought in a little tin of Thinking Putty. My best friend gave it to me years ago, but I didn’t use it much. Then, I discovered that I needed a quiet fidget at work, and I fell in love with the putty. So did my coworker, who kept asking me about it. Finally, I just ordered a multi-pack of mini-tins from Amazon. Three of the other interns and that one coworker signed up to buy it from me before it even came, and I sold/gave tins to three more coworkers shortly after that.
They joked about me being a “putty dealer” . . . so when demand increased for more and firmer putty, I decided to order a pound to save everyone money. I even bought little tins from Amazon for them to keep it in! I’ve already sold a few ounces. There are 9 or 10 of us playing with putty in the office now.
But enough about the putty (which really is awesome. Check out Crazy Aaron’s website). I have a number of ideas for posts, which I will hopefully get to soon. During last school year, I had the chance to talk to my client’s 4th grade class about autism, being different, and kindness. I’d love to try to type up a recap of the conversation, because it was a really good one. It gave me hope for the future. I also have a rough draft of a post about favorite fictional Aspies.
Woodstock Chimes has a special wind chime to raise money for autism research and treatment. This video is wonderful. It tells the story of Tyler, an autistic kiddo who LOVES wind chimes. I really appreciated how positive the autism expert and Tyler’s parents are about autism.
Also, you can hear sound clips of all of the company’s chimes on their website, which I found to be really fun!
For the last several months I’ve been experiencing a deep crisis of faith. Not my Christian faith, but rather my faith in what I do as a TSS. For those of you unfamiliar with the TSS position, it stands for Therapeutic Support Staff. Most of the children served by my agency (and all the kids that I have worked with) are on the autism spectrum, though there are other diagnoses/issues that can cause a recommendation for services. Here’s how it works: after an intake evaluation, a child may get a BSC, who is a master’s level clinician. The BSC consults with the caregivers and school (if relevant) and develops a treatment plan full of objectives and interventions. Then the TSS, a bachelor’s level therapist, implements the interventions (while teaching caregivers/teachers to use them) and collects data and documentation (the bane of my existence).
Some tools of the trade – computer for documentation, a variety of ear protection, visuals, fidget toys, a pencil for writing a flexible visual schedule, highlighter to color in a smiley chart.
I worked for another agency for a year and nine months before reaching burnout point and moving home, and I have worked for this agency just as long. I’ve always been really good at my job – at least, especially good at the working-with-the-kids part, because I *get* them and can tell what’s going on with them before most other adults in their lives. I always figured it was because I have empathy for autistic kids because of my cousins, and because I’m a highly sensitive person myself, and because I’ve studied a lot about autism. But last summer when I realized I have Asperger’s, I started to not only empathize with and understand the kids but also identify with them. And in many ways that has made my job much harder. One day I exclaimed in frustration, “I feel like I’m disguised, helping those adults to oppress my people!” My mom chuckled, but it’s a real feeling.
A big component in the development of my Crisis of Faith was reading a few blog posts as I was exploring my own self-diagnosis.
[Warning – this post is going to involve a lot of “recommended reading.” I’ll try to summarize the key idea of each link I post, but they are all worth reading.]
One of the first was “Quiet Hands.” As I read this post, my heart sank. How many times have I, following the leads of the adults in charge at school, tried to suppress my clients’ stims? Sure, I’ve suggested things like fidget toys as alternatives; and sure, most of my main client’s hand movements are accompanied by disruptive sound effects (think Angry Birds; that’s the game he’s usually playing in his head while stimming with his hands). But I’ve also used this visual:
Which brings me to the next blog, which I think is actually where I saw the previous link. “On Failing Kindergarten,” by Alyssa on Yes, That Too. I spent all last year, and most of this one, watching the staff in autism support rooms trying to make kids follow these rules. I’ve felt frustrated with them making a kid sit with his feet on the floor in front of him, when the kid is trying to sit on his foot or sit cross-legged in the chair- like I do. I’m so uncomfortable with conflict and speaking up. . . if I’m in a situation where I don’t think my advice will be heeded I am unlikely to offer it. But I’ve tried to muster courage to be a sort of advocate when I can. In that specific example I did finally say, “I have trouble sitting on these hard chairs; have you tried one of those squishy things they can sit on?” (I’ve seen them at the school.) The teacher shrugged it off with a, “We’ve tried everything” (not true) and resumed firmly demanding he sit “right” in the chair, threatening him with the weighted lap pad instead of offering it as a good thing.
Situations like that are difficult, because I am a guest in these classrooms and it is not my place to tell the teachers what they’re doing wrong. . . I’m there to explain interventions that work for my client and model them. And like I said, I am uncomfortable. I’m too afraid to say things that will cause discord or bad feelings, since I have to be around these people every day. I was yelled at once at work while trying to implement an intervention and nearly cried; I was terrified of seeing the person again. Although I tried to act normally around them I was also very wary. So I have the internal conflict of watching treatment I strongly disagree with but being afraid of trying to change it.
Here is an example of what it’s like to *see* what the people in charge do not see when an autistic student is acting out. Her writing powerfully conveys the feeling of heartbreak and helplessness I often feel in such situations. – “What I Saw” by AutisticChick
On Failing Kindergarten
I’ve only read a few of Matt Walsh’s posts and I don’t agree with everything he says. But I really liked most of what he says in, “Help, doc, I’m bored by boring things. I think I’ve got the ADHD!” I agree that medication is over-prescribed, but I think he’s a little too strongly anti-meds (for an example of a family who dramatically benefits from meds, check out the BBC documentary Living with ADHD).
Here’s the main point of this post summed up in two quotes:
What if — this is a big IF — what if people are all, like, different?
Don’t stop reading yet. Seriously, think about it. What if there ISN’T actually some preordained mold of behavior and thought in which we’re all supposed to fit? What if it’s OK for some people to be a certain way, while others are another way, and still others are an entirely different way? What if some people are active, and some people aren’t; some people are creative, and some people aren’t; some people have a lot of energy, and some people don’t; some people are daydreamers, and some people aren’t? What if — again, HUGE if — but what if we tried to find a place for the unique qualities of all men and women, rather than attempting to chemically eradicate entire personality types simply because they don’t gel with our artificial societal constructs?
What if we stopped trying to make our kids “normal,” and instead encouraged them to be exceptional?
Could it be that our kids are distracted because they’re surrounded by distractions? Could they be overstimulated because they’re surrounded by stimulation? Could they have trouble paying attention in school because school is tedious and boring?
I really loved that second quote.
I also read one of his rants about public schooling and homeschooling; again, I don’t agree with everything he says, but he made points that resonated and further weakened my already shaky faith in the public school system. And let me tell you, I have had the privilege of working with some amazingly wonderful educators. Ever since I was a child I have had respect and affection for good teachers, and it continues to this day. From what I’ve seen, the school I mostly work in right now is a great school, at least by the standards of the schools I have seen or attended. However. . . more and more I’m seeing how it really doesn’t work for everyone. I see kids falling through the cracks, because even the best teachers are only human and have too much on their plates (crowded classes, heavy workloads, lack of parental involvement, etc). I cannot emphasize enough how much I respect most of these teachers; I honestly cannot think of a single negative thing to say about my client’s second grade teacher, for example. But when I’m sitting there trying to get this kid to stop his noisy stimming while the class is taking turns reading, I have to wonder, “Why are we here?” He pretty much never gets anything out of the lessons in the gen-ed classroom; he learns and works much better one-on-one. Most of our time in the gen-ed room is spent trying to keep him quiet and on task; if he doesn’t have a specific task in front of him like a worksheet it’s rough. So why is he there? To try to learn how to sit still and quiet and listen to group instruction? That leads to the next question – Why? Does he really need those skills? I mean, what kind of additional education is he going to seek in the future, and what kind of job? When I think about it, most jobs don’t involve the kind of “skills” he’s supposed to be learning in school. I am all for him spending time with the gen-ed kids, not only for his benefit but for theirs. We didn’t have any kids like him in my class growing up. In fact, I have so little exposure to individuals who have labels like ID that when I first started going to a Life Skills classroom with another client I felt VERY uncomfortable around those kids, much to my shame. But the kids in my younger client’s class – they accept him. They are willing to help and prompt him and pester him for high-fives. I’ve seen bright and social young boys give up doing something “normal” with their friends at recess to interact with my client and help him practice things like tossing and kicking a ball – and this without any adults suggesting they do so. In those moments I feel hope for the future.
So, what are the next steps? Well, my first personal step is switching gears and going back to college to study Information Sciences and Technology. After we discovered my place on the spectrum, my mom encouraged me to look at career fields that would be a better fit for someone with Asperger’s. I start classes next month and will continue working as a TSS part-time for as long as I can manage doing both. Another step has been slowly “coming out” at work. I didn’t make a big formal announcement, but if I’m chatting with someone about a student’s specific behavior I will say something like, “I can really understand why he has a hard time with the noise in the cafeteria. I started wearing earplugs in there! I’ve come to realize that if there had been more awareness when I was a kid I would have been diagnosed, myself. Loud noises like that are overstimulating to me and make me feel really anxious. Do you think he’d tolerate some kind of ear protection for in there?” I don’t make a big deal about it, but I want them to know I’m giving advice not just as a trained TSS but as an autistic person. An also-autistic person speaking for and defending the rights of these autistic kids who don’t yet know how to speak up for themselves. Which leads me to a third step – promoting true “Autism awareness” by encouraging autistics to raise their voices and NTs to start listening.
I’m typing this and I haven’t even finished reading the post – I like it that much.
My words can express an agreement and hide my dislike for certain things, but my body language is almost incapable.
Even large family gatherings with people who love us can make us anxious. When you dismiss our anxiety with a wave of your hand and a roll of your eyes, you say our feelings don’t matter. Your dismissal of my feelings increases my anxiety because I feel I have disappointed you. I feel like I cannot do anything right.
Because sensory issues play a big part in our lives, we often prefer specific foods. Forcing us to try new foods and chastising us if we don’t proves to me that you don’t respect my boundaries. I am an adult. I know what I like and what I don’t.
I finished reading it and wanted to shout, “Amen!” and show it to everyone I know. Here’s my first step:
I stumbled upon this piece when browsing facebook. It’s quite long, but talks about some fascinating research (I had heard of “autistic symptoms in rats” in studies, but didn’t know what that was supposed to look like). I was of course interested to reach the parts on empathy, such as:
Indeed, research on typical children and adults finds that too much distress can dampen ordinary empathy as well. When someone else’s pain becomes too unbearable to witness, even typical people withdraw and try to soothe themselves first rather than helping—exactly like autistic people. It’s just that autistic people become distressed more easily, and so their reactions appear atypical.
That’s the paradox about autism and empathy. The problem may not be that autistic people can’t understand typical people’s points of view—but that typical people can’t imagine autism.
The school cafeteria is loud. The gym at recess is loud (especially when it’s divided in half and they’re all crammed together). In these settings the young autistic boy I work with often covers his ears. Last year we had him sit beside the cafeteria wall to reduce the noise, and right after lunch we’d go to the sensory room for 15 minutes. I always appreciated getting that break, myself! If we were having a particularly rough day I’d sit on the beanbag with the weighted blanket, not even caring that it amused my coworkers. (As an aside, I love the one I have at home – I got it from DreamCatcher Weighted Blankets).
For a number of possible reasons the cafeteria seems louder this year, and we usually go to recess right after. . . which means I’m feeling overstimulated and irritable right along with my client. Another woman who sits with us at lunch started wearing earplugs, and I kept saying I needed to remember to bring some, and we talked about options that my client might tolerate. Of course due to memory issues (like those described here) I haven’t remembered to bring any in. Today this kind soul had an extra pair and let me have them. Which was good, because I was already feeling overly sensitive today – I couldn’t even wear my ponytail properly-tight because I could feel individual hairs being painfully pulled.
These are staying in my lunch bag.
As soon as we sat down I stuck those little foam plugs in my ears and felt so relieved. I could still hear what was going on around me, but it felt like I was in a protective bubble. I noticed I was able to breathe easier, and when we entered the gym 15 minutes after lunch I instantly stuck those suckers back in. She tried giving my client a pair and he wasn’t able to tolerate them, but we’ve got to find something for him. I’m thinking he’d be ok with something like earmuffs – they may not be quite as sound-blocking, but it would still help! I know I’ll be using earplugs daily.
This is what I feel like doing after being in those ridiculously noisy rooms.
One of these days I want to take a decibel meter to work with me. I wonder if anyone I know has one I could borrow. . .
Holidays can be stressful and emotional times for everyone – having Asperger’s usually makes it worse. I just experienced my first family get-together since my self-diagnosis, and the self-awareness and respecting myself really helped.
Ten years ago, when I first discovered that I was a Highly Sensitive Person, I often used “holidays at Gram’s” as one of my anecdotes to explain to people what it meant. Like this:
When I was little, we’d go to my Gram’s house for holidays. And at some point I’d suddenly tell my parents that I wanted to go home. Mom would say, “Okay, we’ll go in about half an hour.” And I would feel panic and even want to cry. I never knew why. I often liked playing with my cousins, I always liked visiting my Gram’s, and I knew that I was being “unreasonable.” But in those moments, I wanted to go NOW. I’d repeat that I wanted to leave, but I couldn’t articulate that I needed to, because I didn’t understand it. Instead I’d usually go in one of the unoccupied bedrooms and wait there. Now I understand that I was overstimulated, and I had reached my limit – as suddenly as if a switch was flipped.
We’d walk in the door and my senses were assaulted. Food smells, sounds, people moving around. I would also be physically assaulted – aunts with jangly jewelry, powerful perfume, and greasy-makeup-cheeks; uncles with scratchy mustaches; and a swarm of little cousins – all trying to hug and kiss me. I would back up; I would run away; I would squirm; I would actually punch them. They thought it was funny. Sometimes a relative would refrain from trying to grab me and voice that they knew I didn’t want to be hugged, but I often felt bad about that. The thing is, I crave physical touch. It’s one of my main “love languages.” But like most autistic people, I only want it on my terms.
I often felt like I didn’t fit in with my cousins. Not knowing about Asperger’s, I came up with several theories over the years, such as:
I live farther away.
We have nothing in common.
Those were all valid reasons why I felt different. . . but it doesn’t look like I have any aspie-relatives on that side of the family, so I faced the same social divide that I did with my non-blood peers.
At family gatherings – as well as at gatherings with our family friends – I’d frequently wander between the kids and the adults. I’d try to interact with my peers, feel bored and/or left out, and then go hang with the adults until they started talking about boring adult stuff (like people I don’t know). I might wander back and forth a few times or go find a quiet place to read or play my GameBoy. I always loved it when an adult like Aunt E. would pay me some special attention and make me feel less alone. If I was really lucky I would have a friend along; my parents were awesome about letting me take a friend (or two or more) to practically everything. Despite my social deficits I was blessed with some really loyal, understanding friends over the years. Holidays and other events were always easier when one of them was around.
It was a beautiful (albeit a little stressful) drive out into the woods
So back to this year. . . we had Thanksgiving out at my pap’s hunting camp. I asked my mom ahead of time who was planning to be there. I had been out to the camp for Thanksgiving ten years ago, so I had memories of what to expect. When we arrived I dutifully gave hugs and made some effort to join conversations, then sat on the couch for a bit and played a few apps on my phone (no service out there, so I was stuck with offline games- mainly a crossword puzzle app and Flow, which felt rather “stimmy” ). I interacted when spoken to and occasionally joined back in when there was a conversation that interested me, but I didn’t push it. I respected that I have a limited number of spoons for social interaction and didn’t make myself feel guilty for taking breaks. I was still in the same room, after all. I interacted a bit with my cousin’s 1-year-old and took some pictures. And after eating our delicious dinner I sat at the table and had a good conversation catching up with a few people. I had respected my limits, and my relatives were all social in a non-threatening way, not saying anything about me occasionally sitting quietly by myself. At one point I thought, “I’d like to go home now,” but I didn’t bother saying anything because I knew I could last a little longer. The switch had not yet flipped. Success.