My weekly roundup of responses I have posted to other people’s posts here on Medium, for those who don’t feel like scrolling through the Responses tab on my profile.
April 29, 2018
A lot of times we hear the word “anxiety” used interchangeable with “worry.” It’s true that anxiety has a lot in common with worry and often involves feeling worried, but anxiety is more than that.
This has been one of my pet peeves since I started reading and writing here on Medium about my autism diagnosis. In fact, I got kind of rankled when reading Tim Rettig say, “Truth is, everybody experiences anxiety.” No. Everybody experiences worry. Sometimes even substantially. I imagine, though, that mere worry doesn’t manifest itself as a physical presence in one’s body the way anxiety does. I get that there’s both a colloquial and a pathological definition and use of “anxiety”, but that colloquial really has started to grate.
Third, I use and support identity-first language for autistic people. But I will never rail against non-autistic people who use person-first, because they may not know why it is a big deal in my mind. Instead, I will venture to educate those people about the difference, and encourage them to use identity-first language unless an autistic person specifically asks them to do otherwise for them.
I’m still relatively new to all this, and I’m sure the matter is fraught with political peril, but I feel like “person with autism” is a phrase you’d only use if you think autism is a disease in need of a cure, akin to how we say “they have cancer” as opposed to saying “they’re a cancerous person”. I’m not going to spend what is presumptively the second half of my life, happenstantially the post-diagnosis part, looking to be cured. I’m looking to understand, and hopefully finding ways for others to do so as well. I’d hope that no one would call me “cancerous” should I ever have cancer. But, please, go right ahead and call me autistic.
The chief cause of mediocrity is purposelessness.
Personally, I think mediocrity is underrated and unfairly-maligned. I think most people (myself included) are mediocre and never will be more than that, but are taught to spend their lives beating themselves up for not chasing, let alone meeting, some “peak possibility”. The stress of that must be overwhelming. I’m sure it breaks people. Just getting through the day, the week, the month, the year is a tough enough road for most people, without then also feeling ashamed for the distance between them and some indeterminate goal of excellence.
April 30, 2018
I have stimmed as long as I can remember. I thought everyone did. Once you realise that’s not the case, you regulate. It also makes stimming more personal, allows greater focus.
Still relatively new to all this, I’ve not really spent much time even thinking about whether or not I stim. Browsing the web, I ran into a post about a girl who “had a favorite blanket with satin edges that she would rub between her fingers, enjoying the cool soft feel while falling asleep”. I literally had a blanket like this when I was a kid; it’s satin edge even extended well past the end of the blanket, and that strip is what I would run between my fingers. I don’t have a satin-edged blanket anymore, but I realized that for years I’ve semi-absently but very rhythmically figdeted with the skin between my fingers with my thumbs, sometimes to the point of callouses. It’s only in the last couple of days that I’ve realized how frequently I have to stop myself, when in public, from drumming on the table, or the bus seat (if only because when other people do it, I found it supremely grating). I guess I probably do stim, after all. I just never understood that’s what was happening.
The frustration of not finding that one document in the pile on the desk. The distraction and feeling of never being done when seeing the heap of dirty dishes in the sink. The pangs of guilt and embarrassment, thinking ‘I should be more organized’. The buzzing of it, always there in the back of our mind. The paralyses, looking at all of it and not knowing where to begin. The fear of never getting to the end of it.
This, for me, isn’t “clutter anxiety”, but an actual executive function problem and part of my autism. It’s especially prevelant for me around housecleaning, and has been since I was a kid (decades before I even had an autism diagnosis to explain it as anything other than laziness). Talking to my psychotherapist recently, I noted that it’s comparatively easier for me to get the day’s dishes done, because if I don’t it’s one more thing I have to do before I can make breakfast the next morning. But I can put off vacuuming for weeks or more, because unlike the dishes, my carpeted floors remain usable regardless. Recently, because I had to rummage through them all to find a box I needed for an online returns process, I realized that I can, in fact, finally go through the half a dozen storage bins in my closet and throw most of that stuff away (or yard sale some of it), if I just do a single bin each day, but I’ve yet to clear that first executive function hurdle ofjust starting.
Autism acceptance means actually going out of your way to allow an autistic person to thrive in the same manner as anyone else. Let them use tech in a meeting that can assist them to focus. Give them the ability to be somewhere that light and sound can be adjusted. Allow wearing of earphones or earplugs, as well as sunglasses. Be more flexible with the temperature in the office. Allow work from home when possible.
My last job placement in the end (or, really, from the beginning but I was stubborn about it) was unhealthy for me. But I will give them this: No one ever said anything about the fact that I was always in my sunglasses at work. Of course, my next pair, on their way now, have an 80% tint and are mirrored. Not sure they would have gone for that, but fortunately I don’t have to find out.
The key is to know you’re about to cross that threshold, and then stop the direction you’re going in once you realize that. I, on the other hand, don’t see it coming until it’s most of the way to me.
It was not until my most recent job (found as part of a process meant to find me a job that would be compatible with my autism) that I began having what for me were “emotional breakdowns” and to my psychotherapist were “depressive episodes”. Most of them manifested while at work, and necessitated hiding in the men’s room, the only place where no one would be able to get to me. Sometimes I could sense early signs (for me, tremors in my hands, or the beginnings of hyperventilating), and I could head off the actual breakdown just by hiding away from everyone and everything for a bit. Other times, it was a rapid onset, and I’d have to spend 10–15 minutes on the floor of the men’s room crying. To date, I’ve managed to avoid having an episode in any situation where I’d be subject to the additional pressure of being observed by anyone other than my cats. The last thing that work for me if having someone around.
So when it comes to “The Question,” I have been answering “yes.” For the purposes of work, I am at least partially disabled by my bipolar condition. I cannot work full time. I have trouble working in a bustling office with lots of people around. I need flex-time to work around my symptoms. (I can still meet deadlines, though.)
In my case, any future job search almost certainly will once again be through working with my state’s Vocational Rehabilitation program (despite my last job placement being a disaster), in which case the fact of my disability is baked into the process. Then again, I also full disclose my diagnoses on my LinkedIn profile, so I’m not exactly hiding it from the world anyway.
May 2, 2018
Sensory overload was mentioned by the people that I interviewed. With heightened sensitivity the senses can often place a distraction and sometimes make day by day experiences uncomfortable. So, I took into consideration how I might avoid ‘sensory overload’ to make my product a comfortable and engaging experience for the user, by using as few senses as possible.
So, this is a somewhat different type of design and engineering matter, but: sensory overload in a sense is what was at issue for me when, as I wrote here on Medium yesterday, Instagram switched their feed to an algorithm. To me, the complete lack of order involved inflcited a kind of chaos on my brain. I had to stop paying attention to accounts I’d followed from my nonprofit’s account and focus only on posting our own stuff. I am not sure to what degree various conditions, disorders, or mental health impacts ever are taken into consideration just in generaldesign and engineering processes meant to result in products for everyone.
May 4, 2018
Many people’s reaction was that what the Grandfather did was wrong and abusive. I can understand where they are coming from. I don’t know this family, and I only know the barest details of the case.
Do you need to? I don’t think it’s outside the bounds of reason to suggest that maybe the answer is that if one can’t handle one’s autistic grandson without resorting to the use of duct tape, one shoudn’t get to spend unsupervised time with one’s grandson.
If you can, right now even, go spend some time with animals. Find your goat. Or literally, go find a goat. There’s no social interaction and you are allowed to just sit in peace.
This the basic nature of our approach at The Belmont Goats. Our volunteer staff by default is hands-off, except to enforce our short list of common sense rules. All of them are willing and able to answer any questions or tell our story, but we’ve always believed that visitors should be able to define their own experience. While I was not disagnosed with autism and associated anxiety and OCD features until late 2016, there’s never been any question that my own involvement with the herd is of psychological benefit to me. We know that it is for many others, too.
We are able to do many wonderful and important things. The ability to empathize is one of them. I found the speaker’s statement that autistic people lack empathy ironic on a personal level. Her talk had a few very minor glitches: moments where she forgot what she wanted to say next, or stumbled over her words. It was completely normal, and not a big deal; it’s happened to me in almost every talk I’ve ever given. For me those moments were excruciating. I experienced her anxiety, or panic, or hesitation as if they were my own. In other words, I empathized with her.
I don’t spend a lot of time thinking about the empathy thing, but I do feel like there’s some sort of disconnect between how people discuss autistics and empathy and the way I experience empathy. I do wonder if many observers, and somemental health professionals, don’t confuse or conflate the ability to feel empathy with the capacity for acting upon it. I’ve no doubt whatsoever as to my own capacity for empathy. I’ve also no doubt as to my lack of capacity to act upon it. I am not anyone’s shoulder to cry on, and I’m well aware of that, as are most people who know me. But I feel not just for someone in your example, but for characters on television, in movies, and (for crying out loud) even commercials. I just cannot be of any use whatsoever for anyone experiencing that kind of moment. Perhaps one of the most striking moments forme was in the aftermath of my father’s death a decade ago. While I felt the vigil at his bedside at the hospital, while I felt his death, I was not experiencing some sort of emotional chaos, or even obstacle. Later on, however, when we were sitting around going through the logistics, I realized we hadn’t yet called long-time family friends, and both the fact that they didn’t yet know and the fact that they were about to know, these are the things broke me. I had to run from the room, to lose it in private. It’s not even like it was going to be me that had to tell them. That sounds a lot like empathy to me.