\”In the current study, patients met an average of 3.7 concurrent diagnoses. Disorders are also highly heterogeneous — which means that two patients might have the same diagnosis, but have little to no overlapping symptoms and might respond in entirely different ways to the same treatment.\”
I Don’t Do Excitement: Handling Emotions While Autistic
I wrote the bones of my speech the day before, the speech itself the day of, and then I spent another hour or so putting together a handout with further reading and the main points of the speech. Because I\’ve been a student and I swear to you, lectures are the least useful way to convey information.
After all this was done, I had about two hours before I needed to leave. This left me sitting in anticipation. I assessed the emotion absently, labeled it anxiety, and proceeded to put on depression music to shift my emotional state. Basically it\’s the kind of sad/angry music you can kind of drown in, which helps you feel understood and also feel calmer, though not better. I\’ve done this before, and it works quite well.
But I thought about it as I listened to the music, and realized that I was probably going about things wrong. The anxiety feeling was uncomfortable in its strength, but the situation I was heading to wasn\’t really a bad situation. It was simply new and important. If I kept the depression music on, I would be less anxious, but I\’d also approach the situation with resignation and sadness. That wasn\’t a good attitude to bring to these medical students.
I also recalled the podcast I\’d listened to a few months back, which mentioned that emotions can be boiled down to two spectrums: wound up-calm, and positive-negative. Excitement, you see, is merely positive anxiety. Physiologically, they\’re exactly the same. The difference is in how you mentally view the situation.
This realization made me realize I honestly don\’t do excitement. I do anxiety. All excitement in my life has likely been mislabeled anxiety or worry because it\’s what I\’m used to. Granted, the excitement-to-anxiety ratio is probably heavily skewed toward the latter, but I don\’t honestly know.
The end result was that I was so used to feeling bad and reading wound up as anxiety, that it didn\’t immediately occur to me that I should maybe just be happy for myself that I had this opportunity.
After I thought about this for a while, I put on some more neutral, semi-wound-up music and sniffed my calming perfume scent to take the edge off my wound-up-ness. I then began playing a favorite puzzle game on my phone until I could be distracted with other things and needed to go.
I did manage the speech, though I was still pretty…well, it felt like anxiety again frankly, because there was a whole classroom of college-age students looking back at me. I was a bit busy just trying to read the speech and not rush to question whether it was excitement or anxiety.
That\’s something I\’ll have to look for, going forward. I\’m not sure if I\’ll continue to have to do it via deductive work (i.e.: this situation is positive, I should be excited not anxious), or if I\’ll eventually develop a sense for the difference.
Either way, this is progress.
I Don\’t Do Excitement: Handling Emotions While Autistic
I wrote the bones of my speech the day before, the speech itself the day of, and then I spent another hour or so putting together a handout with further reading and the main points of the speech. Because I\’ve been a student and I swear to you, lectures are the least useful way to convey information.
After all this was done, I had about two hours before I needed to leave. This left me sitting in anticipation. I assessed the emotion absently, labeled it anxiety, and proceeded to put on depression music to shift my emotional state. Basically it\’s the kind of sad/angry music you can kind of drown in, which helps you feel understood and also feel calmer, though not better. I\’ve done this before, and it works quite well.
But I thought about it as I listened to the music, and realized that I was probably going about things wrong. The anxiety feeling was uncomfortable in its strength, but the situation I was heading to wasn\’t really a bad situation. It was simply new and important. If I kept the depression music on, I would be less anxious, but I\’d also approach the situation with resignation and sadness. That wasn\’t a good attitude to bring to these medical students.
I also recalled the podcast I\’d listened to a few months back, which mentioned that emotions can be boiled down to two spectrums: wound up-calm, and positive-negative. Excitement, you see, is merely positive anxiety. Physiologically, they\’re exactly the same. The difference is in how you mentally view the situation.
This realization made me realize I honestly don\’t do excitement. I do anxiety. All excitement in my life has likely been mislabeled anxiety or worry because it\’s what I\’m used to. Granted, the excitement-to-anxiety ratio is probably heavily skewed toward the latter, but I don\’t honestly know.
The end result was that I was so used to feeling bad and reading wound up as anxiety, that it didn\’t immediately occur to me that I should maybe just be happy for myself that I had this opportunity.
After I thought about this for a while, I put on some more neutral, semi-wound-up music and sniffed my calming perfume scent to take the edge off my wound-up-ness. I then began playing a favorite puzzle game on my phone until I could be distracted with other things and needed to go.
I did manage the speech, though I was still pretty…well, it felt like anxiety again frankly, because there was a whole classroom of college-age students looking back at me. I was a bit busy just trying to read the speech and not rush to question whether it was excitement or anxiety.
That\’s something I\’ll have to look for, going forward. I\’m not sure if I\’ll continue to have to do it via deductive work (i.e.: this situation is positive, I should be excited not anxious), or if I\’ll eventually develop a sense for the difference.
Either way, this is progress.
Reading the Research: (Re)Building Hope
Today\’s article talks about the importance of hope in a therapeutic setting. It also mentions hope\’s relationship to optimism and self-efficacy (in plain speech: how much you believe you can affect your life and surroundings, or how much control you feel you have). The specific disorders studied were anxiety disorders, which occur alongside autism with a unfortunate frequency.
For anyone who might not be familiar, Cognitive Behavioral Therapy (or CBT) is basically the go-to therapy in the current age. There are a dozen or so schools of thought in therapeutic psychology, but when each was put to the test, only two consistently and repeatedly showed results: cognitive psychology, and behavioral psychology.
The first focuses on analyzing your thoughts, identifying patterns that destabilize you and giving you mental tools to shift your thinking. The theory is that if you shift how you think, positive change will follow. The second is more interested in your behavior: changing what you do, or how you do it so it\’s more supportive to a healthy and happy life. The theory is that if you positively change your behavior, your thoughts and life will follow suit.
Both theories worked, so people proceeded to combine them. In addition, rather than hyperfocusing on a person\’s past, as some schools of thought did, CBT is firmly focused on the present. The past is relevant because it\’s influenced the present, but the interest is improving the here and now. The emphasis is also to help you develop your own mental toolkit, which can mean less need of therapists over time and more stable day-to-day living. It\’s a good therapy, and I recommend it to anyone.
It\’s often the case that people only come to therapists when they\’re out of options. At that point, their hope is a flickering candle, which makes it difficult to create positive change. As such, a therapist\’s job is often to prop up the person\’s failing hope, and to offer more reasons to be hopeful. Doing the work of the therapy, which creates positive change, can then lead to more hope and increased recovery, which turns into an upward cycle as it repeats.
Results like this are probably why institutions upset me so much (I don\’t have personal experiences with them, unlike this person or this person). They\’re the death of hope for the person locked away. Institutions are psychologically harmful: they destroy self-efficacy and decay hope. They don\’t allow for personal growth or improvement. They are merely prisons for people who don\’t fit in. This is one of many reasons why most autistic advocates call for the end of institutions.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)
Book Review: The Partner’s Guide to Asperger’s Syndrome
That said, some of the advice given here was broadly applicable regardless of the partnership composition. There are certain tendencies addressed in this book that often apply to autistic people. In many cases, these were exaggerated version of traits I sometimes display myself but could clearly see why they were painful to the neurotypical spouse or partner. This similarity made the book rather painful for me personally to read, but I expect it would be rather enlightening for people who don\’t have an innate understanding of these behaviors.
Included sections are things like differences in communication, social skills, executive function, sensory processing issues, how to cope with stress, parenting, and common situations a NT spouse may find themselves in. All included sections seemed highly relevant to the book\’s overall message. The authors even attempted to give the book some balance by including a \”positives and negatives\” chapter about autistic traits.
I appreciated this effort to present the strengths an autistic partner can bring to a relationship, but I feel that overall the book focused intently on our deficiencies. I felt rather sad and like I\’m a broken human as I read the book, matching some of my tendencies to the stories of dysfunction in various real and fictitious relationships described in the book.
I feel like this wasn\’t really the authors\’ intent, and it\’s possible I\’m being oversensitive on the subject. After all, this is a book to help NT partners handle communication breakdowns and manage living with someone very different than oneself… it\’s not a book celebrating fully functional relationships that have few problems.
My sadness aside, the book had valuable (if rather brief) information on all the subjects it addressed. I would suggest this as a starting point for a partner, and then to follow up on specific questions and subjects. Like, if the autistic partner has severe rigidity, there might be specialized resources for that. Or they might have touch sensitivity but not visual or sound sensitivity, so you might look into a book or expert who knows a lot about that subject.
The last thing that struck me about this book is that it strongly recommends finding three therapists: one for the autistic partner, one for the NT partner, and a relationship counselor for the relationship or marriage. The authors also caution the NT partner to find a therapist that understands autism, because otherwise their concerns may be waved away as being a worry-wort or being overbearing. I have no personal experience on the matter, but I can definitely see something like this happening, and I wouldn\’t wish it on anyone.
Read This Book If
Book Review: The Partner\’s Guide to Asperger\’s Syndrome
That said, some of the advice given here was broadly applicable regardless of the partnership composition. There are certain tendencies addressed in this book that often apply to autistic people. In many cases, these were exaggerated version of traits I sometimes display myself but could clearly see why they were painful to the neurotypical spouse or partner. This similarity made the book rather painful for me personally to read, but I expect it would be rather enlightening for people who don\’t have an innate understanding of these behaviors.
Included sections are things like differences in communication, social skills, executive function, sensory processing issues, how to cope with stress, parenting, and common situations a NT spouse may find themselves in. All included sections seemed highly relevant to the book\’s overall message. The authors even attempted to give the book some balance by including a \”positives and negatives\” chapter about autistic traits.
I appreciated this effort to present the strengths an autistic partner can bring to a relationship, but I feel that overall the book focused intently on our deficiencies. I felt rather sad and like I\’m a broken human as I read the book, matching some of my tendencies to the stories of dysfunction in various real and fictitious relationships described in the book.
I feel like this wasn\’t really the authors\’ intent, and it\’s possible I\’m being oversensitive on the subject. After all, this is a book to help NT partners handle communication breakdowns and manage living with someone very different than oneself… it\’s not a book celebrating fully functional relationships that have few problems.
My sadness aside, the book had valuable (if rather brief) information on all the subjects it addressed. I would suggest this as a starting point for a partner, and then to follow up on specific questions and subjects. Like, if the autistic partner has severe rigidity, there might be specialized resources for that. Or they might have touch sensitivity but not visual or sound sensitivity, so you might look into a book or expert who knows a lot about that subject.
The last thing that struck me about this book is that it strongly recommends finding three therapists: one for the autistic partner, one for the NT partner, and a relationship counselor for the relationship or marriage. The authors also caution the NT partner to find a therapist that understands autism, because otherwise their concerns may be waved away as being a worry-wort or being overbearing. I have no personal experience on the matter, but I can definitely see something like this happening, and I wouldn\’t wish it on anyone.
Read This Book If
Reading the Research: Balancing Usefulness
My worry here is twofold. First, a 60% rate of success is barely better than flipping a coin. A lot of things can make a person sweat, such as \”eating spicy food,\” \”being in a room that\’s too warm,\” \”being sick,\” and \”drinking a cup of coffee.\” This is not, on the whole, a great indicator of an incoming problem. In particular, this tool wouldn\’t seem to be terribly useful when a person is exercising. They\’d already be sweating from the exertion, which would set it off without there being necessarily any developing \”behavior problems.\”
Yet in situations with autistic people prone to physical outbursts, the end result is that it will be treated like it\’s reliable, simply to avoid the possibility of property damage or self-injury. This is especially true in institutions, where the person\’s physical wellbeing is very much secondary to problems they might cause. You might end up with autistic people being straitjacketed or sent back to their rooms simply for reacting with happy excitement to another person or a favorite game or TV show.
My second problem with this idea is this: it can and will stand in for actual communication. One of the researchers said this: \”Individuals who are severely affected by autistic spectrum disorders are often unable to verbally communicate their discomfort when they become stressed\” (My emphasis added via italics). Verbally communicate. Neurotypical people are so hyperfocused on verbal communication.
There are lots of ways to communicate that you\’re not doing well, including pointing to a face on a chart, using an app on a tablet, or waving at the relevant caretaker and then making an unhappy face. These methods of communication are all the more important when it comes to nonspeaking autistic people, and paying attention to them is mandatory. But it seems some people would rather wait for a voice from heaven to tell them, verbally, that something is up rather than simply using their eyes or teaching how to nonverbally communicate their emotions.
Maybe this technology, instead of being used as an alarm system, could be a teaching tool to help autistic people recognize when they\’re getting upset. But at least for the moment, that\’s not the world we live in.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)
Worth Your Read: Forced Friendships
This week\’s article is valuable for several reasons. First, it contains a valuable perspective from a black mother. Autism is often a \”white male\” condition, in that we often assume people who have it are those two things. The thing is, that is increasingly not the case. I\’m female, and this mother and her son are black. These experiences are just as valid as that of the more visible, stereotypical autistic people. It\’s valuable to listen to these perspectives because it teaches us more about autism as well as broadening our understanding of what it means to be human.
The second reason is that this article talks about consent in terms that people may not consider them. Consent, broadly, is the idea that people should be allowed to give or deny permission for things relating to themselves. It was first brought up in terms of sex and sexual activities (ie: teach this and use it to identify and avoid rape). In very very brief, if freely given and enthusiastic consent for the sexual activity is not obtained from all parties, those activities are rape against the non-consenting people. Coercing, begging, or guilting a person into giving consent to an activity does not count as receiving consent.
The idea has since broadened to less intimate activities, including hugs and other forms of touch. There are people, myself included, who can react very poorly to sudden touches. This isn\’t just autistic people, anyone with touch sensitivities, or people who have suffered physical abuse, can be affected like this. Even touches that are seemingly harmless, like hugs or a hand on the arm or shoulder, can startle, upset, and even hurt the person. Because of that, it\’s wise not to assume a hug will be welcome, and instead ask whether you can hug the person. This is respectful of the person, their boundaries, and their bodily autonomy.
By the way, this idea of bodily autonomy extends to family interactions as well. Uncles, aunts, cousins, grandparents, even direct parents, may feel the need to express affection via hugs or other familiar touches. They may consider these touches their right, being family. I have to tell you, a touch doesn\’t stop hurting just because it\’s someone you love doing it. These well-meaning gestures of affection can come off as overwhelming, agonizing, selfish demands, and the autistic person may come to dread them. Respect your child\’s right to say no to these gestures, and help your relatives understand and respect this right as well.
This mother takes consent a step further. Although autistic people can have trouble with having and keeping friends, she considers it her son\’s choice whether to spend time with people or not. If her son wants to go to an event, she arranges for him to be there, and if he doesn\’t, she doesn\’t force him to go.
This seems like such a simple idea, and it\’s one that most adults take for granted. But as she points out, the parental hope of \”normalizing\” the autistic child can overwhelm any caution or respect for the child\’s boundaries. While it\’s true that practice with social skills is helpful for learning and growing those skills, forcing the practice can absolutely backfire.
Personally, I think if my parents pointedly left with me \”normal children\” expecting me to \”become more normal,\” I would internalize two things:
1. My parents do not love me. They may say they do, but their eyes and hearts are fixed on some imaginary, non-autistic human being they think I should have been.
2. I am unacceptable the way I am. I must change who I am in order to be acceptable and worthy of love.
Needless to say, I hope, these are really not the messages you want to give your already-struggling autistic children. So please don\’t. Please follow this mother\’s advice: consider their wants and how they communicate. Teach consent and bodily autonomy. Respect their right to say \”no\” to things. This is how you keep your children safe.
The Last Legwork and Life?
Also, while I suppose technically my day-to-day life provides some insight on how autism can change your experience of things, I just don\’t feel like it\’s a super valuable part of the blog overall. The hope was to make this blog a resource for parents, teachers, fellow autistics, and other interested parties, and I\’m not sure a journal-style regular segment is really the most useful part of that.
If you have strong feelings on the subject, feel free to email me at therealisticautistic(A T)gmail.com. I\’m willing to listen to my readers. On the whole, though, this blog really hasn\’t garnered much by way of comments, feedback or really anything at all beyond my immediate family, so I\’ll be surprised if I receive an email.
I don\’t anticipate never writing an L&L again, I suppose, but I feel like it\’ll probably be more like a bonus, when something actually happens in regards to my career or health.