Reading the Research: Amplifying Diversity in the Workplace

Posted on by Realistic Autistic

Welcome back to Reading the Research! Each week I trawl the Internet to find noteworthy research on autism and related subjects to share with you. Along the way I discuss the findings with bits from my own life, research, and observations.

Today’s article shows the benefits bosses and companies can reap when diversity in the workplace is respected and amplified. That diversity can include neurodiverse people, like autistic folks, but it can also include black people, immigrants, and even the aged or young among us.

diversity in the workplace: black woman sharing her presentation with her white colleagues
Collaboration takes many forms, but the best ideas come from listening to everyone- not just people who look like you. Diversity in the workplace benefits all of us. Photo by Canva Studio.

There is, I think, the preference for those “like us,” especially in groups and companies predominantly one ethnicity. In the US, that’s white people like me. The problem is that the “ingroup” can only generate so many ideas. We can see this pretty clearly in Hollywood’s choice of major movies. The typical directors and screenwriters are white and male. The Oscars are almost exclusively judged by old white guys. The same ideas get used and reused. It’s incredibly hard for marginalized people to get their ideas up to the highest level. Even if their ideas are actually really good. (A couple that made it through despite the immense difficulty: Creed and Black Panther).

Missing the Best Ideas

So many good ideas are thought up and are never used or even heard by people in power, simply because people don’t put a lot of stock in diversity in the workplace or ideas from marginalized people. (In fact, it’s difficult for marginalized people to get hired at all.) Thankfully, it doesn’t have to be that way. Ideally, we would simply hire and promote marginalized people in all industries. That way ideas could be introduced naturally in an organization’s power structure. Unfortunately, that’s not how most companies are right now.

So until things improve on that front, there’s another solution: making sure managers and other higher-status people in organizations listen to all their employees. If a good idea comes up, that higher-status person can promote it, or signal-boost it and the person that thought of it. Since the person is higher-status, others with power in the business will listen to them and the good idea. In turn, this makes the company more likely to use the good idea and benefit from it. Finally, the inventor of that good idea receives recognition for their work, and the possibility of advancement.

The Problem and a Solution

The tripping point is that many managers don’t see the value in promoting ideas from their underlings. Often, they would rather not rock the metaphorical boat, or take risks associating with lower-status people in the company.

Here’s the thing, though. This article tells us that this decision to promote good ideas from marginalized people pays off big time. The company benefits because good ideas rise to prominence, allowing the decision-makers to choose from the best possible options. The marginalized person benefits from the recognition of their good idea.

And the missing piece: the promoter also gains a status boost from bringing the good idea to the table and crediting the idea’s owner. Essentially, everybody wins. There’s no reason not to do this. Plus, doing this can lead to better, more competitive, fairer organizations where the best idea truly does win.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter! There are links and comments on studies that were interesting, but didn’t get a whole Reading the Research article about them.)

WYR: Nonverbal Communication

Posted on by Realistic Autistic

This is a link to a good piece about nonverbal communication (actually better termed nonspeaking communication): https://iancommunity.org/aic/neglected-end-autism-spectrum

There are a lot of means of communication besides speech. For example, a person’s posture, tone of voice, gestures, eye contact, and facial expressions are all commonly used alongside speech. However, these are normally overlooked. Many people consider them supplemental to the words used. Which is funny, because in my experience they’re sometimes even more important than the words a person uses. A simple change in expression or a particular tone of voice can change the whole meaning of a sentence.

But when it comes to autistic communication, the expectation is that words are the ultimate goal, and everything else should be ignored.

Perhaps you’re familiar with the above examples of nonverbal communication. Hopefully you recognize their importance. Something we don’t typically recognize, though, is that behavior is also communication.

Behavior as Communication

For example, refusing to do a thing is communicating something. It could be “I don’t like this thing.” Or it might be, “I am doing particularly poorly today, and rejecting this thing I normally enjoy should tell you this is important.”

The exact reason may be unclear, but the message needn’t be clear and precise to be a message.

The correct response to “challenging behavior” is not to punish the person. It’s to ask “why?” What might be happening with the person? Some example questions: Are they in pain (gastro-intestinal problems are common!)? Perhaps they’re frustrated because their communication isn’t being recognized or respected? Have you or they met all their needs? Are you presuming competence and intelligence when talking to them, or are you treating them like you would a small child?

It’s common, unfortunately, to treat nonspeaking people like small children. The presumption seems to be that since they don’t speak, they also don’t have the intelligence to speak. This is categorically false. The counter-examples are numerous. Off the top of my head, Naoki Higashida, the author of The Reason I Jump, is one. Another is D. J. Saverese, who starred in the movie Deej. Finally, there’s Owen Suskind, whose father wrote about him in Life, Animated. Each of these people struggled with typical speech despite being quite intelligent. Each found non-traditional ways to communicate.

Unfair Tests

Our intelligence-measurement tools typically limit us to only measuring people with near-fluent speech, which bars many nonspeaking autistic people from getting fair test results. For adults, there’s also the expectation that they can read. This isn’t always the case, and not even for the usual reasons. Autistic people sometimes also suffer learning disabilities, including dyslexia, tunnel reading, contrast or resolution impairment, and even environmental distortions. We might have 100% functional eyeballs, but the muscles that govern their movement might be uncoordinated. The words on the page might seem to flutter, wiggle, or shake rather than holding still the way they ought to.

Imagine this text shaking and blurring as you squint at it. Now imagine you have to look at textbooks every day for the rest of youre life. Is it any wonder autistic children can find school so miserable? Photo by Dario Fernandez Ruz
A Lifetime of Growth

It is fashionable, in the world of autism therapy, to push for therapy (especially Applied Behavioral Analysis) as early as possible in the autistic person’s life. There’s this sort of loudly unstated assumption that if you don’t get a person speaking before a certain age (6, I guess?), they may never speak at all. Leaving aside the incredible amount of abuse that typically accompanies an ABA program… this article, and many others, show us how false this assumption is.

Psychology itself has progressed past this incredibly backwards mentality decades ago. While we once believed that you truly couldn’t teach an old dog new tricks, the reality is that dogs of any age can learn new tricks. And humans of any age can learn new things. The term for this ability to grow and change over time is “neuroplasticity.” Neuro, like neurons, the nerve cells in your brain. And plasticity, like plastic: moldable, changeable, and shapeable.

Autistic people are people. Like any person, we have the ability to grow and change. Being autistic doesn’t change that. Not speaking fluently doesn’t change that. Communicating with a Picture Exchange Communication System (PECS) doesn’t change that. Nonverbal communication is just as valid as fluent speech, and sometimes far more powerful.

The question has never been “when will my child speak fluently?” It has always been “am I listening to what they’re telling me?” Because all humans communicate. Whether that’s with fluent language, a text-to-speech app on a phone, or simply pointing and smiling is irrelevant. Are you listening?

Reading the Research: Online Social Support

Posted on by Realistic Autistic

Welcome back to Reading the Research! Each week I trawl the Internet to find noteworthy research on autism and related subjects to share with you. Along the way I discuss the findings with bits from my own life, research, and observations.

A type of social support: people/friends supporting each other at top of cliff after hiking
Social Support can look like this. More often for me it’s talking to someone one-on-one in near-darkness. Photo by PNW Production.

Today’s article about online social support strikes me as both important and disappointing. The rise of social media has made staying in touch (or at least adjacent) to the people you know easier. My hope was that this would also mean better support networks for everyone. In theory, the more people you have in your network, the more expertise you can call on in times of need. Also, the broader you can spread your emergencies. The relationships in your network need to be meaningful to be properly supportive, though. I’d rather hoped that the Internet would still provide that.

According to this article, it seems this is not the case. Or at least it’s not usually the case when it comes to seeking support with difficult situations while addicted to social media. This is a fairly narrowly focused piece of research. Given that at least a third of my friends show signs of social media addiction, though, it seems all-too-relevant.

My guess is that people are trying to meet their social needs by way of the Internet, rather than investing in the time, pain, and effort of in-person relationships. I’m not sure exactly what makes the difference measured in this study. Is it that online people are less people to us? Is it the lack of “reality,” such as not being able to touch or see others? The study doesn’t say.

Personally, Then and Now

I wrote a post about what a social life could or should look like a few years back. Reading it now, I’m disappointed about where I’m at compared to that time. I had regular meetups with friends and family, including built-in exercise. In all honesty, I’d like all that back.

Realistically speaking I really can’t blame anyone for losing much of it. Not even myself. No one predicted exactly when the coronavirus would strike, and no one in power was listening to the scientists that predicted there would be a pandemic event like this. Online meetups can only help so much, compared to in-person activities. And I’m also not much of a planner, since I’m typically overwhelmed. Change is hard for me, just like it is for most autistic people.

I think a lot of people have retreated to Internet-only or Internet-mostly communication during the lockdown. The concern for personal safety and the safety of others meant keeping away from events. Many people, myself included, also avoided close friends and family while we waited to hear what contact, if any, was safe.

With the vaccine rolling out, it’s becoming much safer to spend time with others. At this point, I’ve completed the vaccination process. So I guess it’s time to start trying to pick up the pieces and establish in-person meetups and connections again.

Hopefully I can get back to that place of stability and connectedness soon.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter! There are links and comments on studies that were interesting, but didn’t get a whole Reading the Research article about them.)

Book Review: Parallel Play

Posted on by Realistic Autistic

Parallel Play: Growing Up With Undiagnosed Asperger\’s, by Tim Page, is a \”my life with autism\” story from one of our older survivors.  The book mainly deals with his childhood, as the title suggests, and is written in the typical autistic conversational-explanational tone that so frequently graces our literature.  Mr. Page\’s prose is more polished than most, I would say, which is likely due to his many years of wordsmithing.  

I call this autistic generation The Lost Generation, personally, because few of these autistic people avoided institutionalization, and those that did typically suffered immensely.  Autism was simply not understood, let alone supported.  There was no community to which we could find advice from others like us.  No comradery and fellowship.  No support services designed to meet our needs.  

Those of us that survived without being sent to the destructive prison-institutions typically bear scars and unhealthy adaptations from the experience.  Depression and anxiety are common.  For this author?  One of those unhealthy adaptations is a fixation on death.  This isn\’t uncommon for autistic people- anything can turn into a hobby or fascination.  Morbid subjects aren\’t unreasonable, especially when a close family member (such as the author\’s grandfather) dies when the autistic person is young.  

In the author\’s case, there are no gory details to be had.  His interest in the subject included a much-heightened fear of death and interests in deceased authors, musicians, and silent films.  I suspect this book would be quite a nostalgia trip for an older person, especially one that grew up in the Northeast US at around the same time.  In that sense, I am very much not the target audience.

One thing is painfully consistent regardless of generation, though.  The pain of living in a world that constantly misunderstands and willfully rejects you is clear throughout this book.  You can see this same pain in Liane Holliday Wiley\’s writing.  Both Tim Page and Liane suffered immensely, and neither of them had any kind of fellow autistic community.  They were simply alone, and found their way as best they could with other misfits.  

Another painful echo found in this book as well as other autistic accounts was perhaps summarized best by Jennifer Cook O\’Toole: \”How can I be so smart, yet so stupid?\”  Tim Page mentions scoring well on IQ tests (though no specific numbers) a couple times in the book, and inevitably with those mentions also comes a certain disbelief, and the suggestion that his father might have tampered with the results.  I certainly have no special insight into that suggestion, but I suspect Mr. Page, like many people, operates on the idea that IQ is somehow a blanket score for intelligence.  

I strongly suspect I will go blue in the face before I ever finish convincing people that no, it is not.  IQ is a measure of how well a person is likely to learn in a typical school setting, using typical teaching methods.  It does not account for learning disabilities.  It does not cover common sense, emotional intelligence, musical ability, hand-eye coordination, and social skills.  It\’s a highly restrictive scale that should only be considered useful in highly restrictive settings.  But because of the value people place on it, a person with a high IQ score is assumed to be good at all these other things.  When they turn out not to be, disappointment is about the kindest response I\’ve seen.  Rejection, disbelief, and avoidance are significantly more common.

This aloneness and rejection tends to breed a mindset of \”I don\’t fit in and it\’s my fault.  If only I wasn\’t so ____, I would have friends and be happy.\”  This sense of being wrong and bad is pervasive.  I should know: a part of me still believes that even though it\’s definitely unhealthy, bad, and just flat-out wrong.  It\’s the same poisonous mindset as believing that I can\’t be beautiful because larger women can\’t be beautiful (except for every other larger woman, because obviously the beauty industry is manipulative and horrible).  

It\’s exactly these kinds of experiences that make it worthwhile for me to step forward and identify myself as autistic.  Simply knowing \”there\’s someone else like me\” is a massive relief and boost to quality of life.  It\’s why representation in the media, especially genuine representation, is so important.  Parents do better knowing autistic adults, because it gives them a picture of what their kids might grow to be.  Autistic kids can receive that same benefit, but they also can gain courage to be themselves.  Also strategies and insights they might never have had themselves.

In short, they can have the things I never had, and hopefully be healthier and happier humans for it.  We march to our own drums, we autistic people.  Each of us stunningly unique.  One day I hope that uniqueness won\’t contain a rainbow of trauma as a given.  

Read This Book If

You want to experience a vivid slice of life narrative from an autistic man who grew up in the 50s and 60s.  They were a remarkably different time, those days before the Internet came to everyone\’s phones, computers, and homes.  This era wasn\’t my era, but I think there\’s value in knowing what life was like before the modern one… and in knowing the stories of the Lost Generation, perhaps find something of ourselves.

Book Review: Parallel Play

Posted on by Realistic Autistic

Parallel Play: Growing Up With Undiagnosed Asperger’s, by Tim Page, is a “my life with autism” story from one of our older survivors.  The book mainly deals with his childhood, as the title suggests, and is written in the typical autistic conversational-explanational tone that so frequently graces our literature.  Mr. Page’s prose is more polished than most, I would say, which is likely due to his many years of wordsmithing.  

I call this autistic generation The Lost Generation, personally, because few of these autistic people avoided institutionalization, and those that did typically suffered immensely.  Autism was simply not understood, let alone supported.  There was no community to which we could find advice from others like us.  No comradery and fellowship.  No support services designed to meet our needs.  

Those of us that survived without being sent to the destructive prison-institutions typically bear scars and unhealthy adaptations from the experience.  Depression and anxiety are common.  For this author?  One of those unhealthy adaptations is a fixation on death.  This isn’t uncommon for autistic people- anything can turn into a hobby or fascination.  Morbid subjects aren’t unreasonable, especially when a close family member (such as the author’s grandfather) dies when the autistic person is young.  

In the author’s case, there are no gory details to be had.  His interest in the subject included a much-heightened fear of death and interests in deceased authors, musicians, and silent films.  I suspect this book would be quite a nostalgia trip for an older person, especially one that grew up in the Northeast US at around the same time.  In that sense, I am very much not the target audience.

One thing is painfully consistent regardless of generation, though.  The pain of living in a world that constantly misunderstands and willfully rejects you is clear throughout this book.  You can see this same pain in Liane Holliday Wiley‘s writing.  Both Tim Page and Liane suffered immensely, and neither of them had any kind of fellow autistic community.  They were simply alone, and found their way as best they could with other misfits.  

Another painful echo found in this book as well as other autistic accounts was perhaps summarized best by Jennifer Cook O’Toole: “How can I be so smart, yet so stupid?”  Tim Page mentions scoring well on IQ tests (though no specific numbers) a couple times in the book, and inevitably with those mentions also comes a certain disbelief, and the suggestion that his father might have tampered with the results.  I certainly have no special insight into that suggestion, but I suspect Mr. Page, like many people, operates on the idea that IQ is somehow a blanket score for intelligence.  

I strongly suspect I will go blue in the face before I ever finish convincing people that no, it is not.  IQ is a measure of how well a person is likely to learn in a typical school setting, using typical teaching methods.  It does not account for learning disabilities.  It does not cover common sense, emotional intelligence, musical ability, hand-eye coordination, and social skills.  It’s a highly restrictive scale that should only be considered useful in highly restrictive settings.  But because of the value people place on it, a person with a high IQ score is assumed to be good at all these other things.  When they turn out not to be, disappointment is about the kindest response I’ve seen.  Rejection, disbelief, and avoidance are significantly more common.

This aloneness and rejection tends to breed a mindset of “I don’t fit in and it’s my fault.  If only I wasn’t so ____, I would have friends and be happy.”  This sense of being wrong and bad is pervasive.  I should know: a part of me still believes that even though it’s definitely unhealthy, bad, and just flat-out wrong.  It’s the same poisonous mindset as believing that I can’t be beautiful because larger women can’t be beautiful (except for every other larger woman, because obviously the beauty industry is manipulative and horrible).  

It’s exactly these kinds of experiences that make it worthwhile for me to step forward and identify myself as autistic.  Simply knowing “there’s someone else like me” is a massive relief and boost to quality of life.  It’s why representation in the media, especially genuine representation, is so important.  Parents do better knowing autistic adults, because it gives them a picture of what their kids might grow to be.  Autistic kids can receive that same benefit, but they also can gain courage to be themselves.  Also strategies and insights they might never have had themselves.

In short, they can have the things I never had, and hopefully be healthier and happier humans for it.  We march to our own drums, we autistic people.  Each of us stunningly unique.  One day I hope that uniqueness won’t contain a rainbow of trauma as a given.  

Read This Book If

You want to experience a vivid slice of life narrative from an autistic man who grew up in the 50s and 60s.  They were a remarkably different time, those days before cell phones, and the Internet in everyone’s pocket.  This era wasn’t my era, but I think there’s value in knowing what life was like before the modern one… and in knowing the stories of the Lost Generation, perhaps find something of ourselves.

Reading the Research: Eye Contact for Everyone?

Posted on by Realistic Autistic

Welcome back to Reading the Research! Each week I trawl the Internet to find noteworthy research on autism and related subjects to share with you. Along the way I discuss the findings with bits from my own life, research, and observations.

Today’s article is one of those little ironic joys I sometimes find in my research. These are the articles that point out what a metaphorical house of cards ableists stand on when they preach to autistic people about “correct” communication. Another turn of phrase that goes well with this is “those who live in glass houses shouldn’t throw stones.” Today, you see, is about eye contact.

human green eye reflecting building and blue sky
Photo by Bruno Henrique. If you’ve gotten this close to someone’s eyeball, you’re probably doing eye contact wrong. :3
Eye Contact and Mental Static

Eye contact is a subject that often becomes a focal point for “correct” communication. The rough summary is that you should spend about 85% of a conversation looking at the other person or people. The remaining 15% you can spend looking at the scenery or whatever else. Looking at the person speaking allows you to get additional information from their face and body. Seeing how others in the conversation react can likewise give you valuable information about how you’re expected to act and react. In theory, there’s no reason you wouldn’t look at the person or people you’re talking to.

The thing is, looking people in the face is hard. It’s a lot of information all at once. If an autistic or other neurodiverse human is already struggling with information overload, demanding that we look at others directly is not helpful. It’s cruel and counter-productive. Not only are we still going to miss the information conveyed by a person’s face, but we may also miss even more than usual because of the additional overload.

Some people describe looking others in the face as adding a layer of static into their brains. It can cause them to miss words or phrases or even entire sentences. That’s comparable to being hard of hearing in quality-of-life terms. For me, it’s more like being hit on the side of the head with a baseball bat. The more familiar the face is and the better I’m doing that day, the softer the mental impact is. Still, I don’t typically make eye contact with people in the grocery store, even if I’m talking to them directly. I’m sure that bothers them to some extent, but it’s not worth the mental pain and exhaustion to me.

The Kicker

What really tickled my metaphorical funny bone about this article was the fact that otherwise “normal” humans have this same behavior pattern. Teenagers (ages 10-19) and older adults (ages 60-80) show this exact same avoidance of eye contact and faces.

I’m honestly uncertain as to whether the reasons for that behavior are the same as our autistic reasons, but they could well be. Teenagers are typically dealing with both an influx of hormones and a massive expansion in social requirements and feelings. Therefore adding in the extra effort of looking people in the face might well constitute information overload. Older adults have to deal with the deterioration of their bodies, the passing of friends and family, and adjusting to the massive changes the world has gone through. These things, too, could overload a person.

And doesn’t it just figure, regardless of the reason… that the proposed solution the article gives is “obviously these people should pay more attention to faces!” And not something like adjusting communication expectations so everyone, autistic or not, can participate.

That’d be crazy, I guess. It’s not like most people can tell whether you’re looking their eyes or their mouths… oh, wait. They can’t.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter! There are links and comments on studies that were interesting, but didn’t get a whole Reading the Research article about them.)

Worth Your Read: Autistic Meltdowns

Posted on by Realistic Autistic

http://www.thinkingautismguide.com/2021/05/its-never-just-sandwich.html

Autistic meltdowns are one of those things we all wish didn’t happen. They’re about as much fun as being tied to a railroad track and watching the train rush you at high speed. Nobody wants to melt down. It just happens.

There’s a lot of reasons why. We autistic people live in a world not designed for us. It’s noisy, and full of distractions. The way we communicate isn’t recognized or respected. We’re told, directly and indirectly, that it never will be unless we communicate exactly as everyone else expects. Our coping mechanisms (like stimming and unusual hobbies) are vilified and punished.

We develop comparatively rigid habits and preferences as a result of this unfriendly, unfair, and frustrating world. It’s a way of making a small part of the world more friendly. Small things, at least, can be designed for us. When those small things are violated, it’s upsetting. It’s really less about how the sandwich is cut. Rather, it’s about having that small thing we relied on to keep us sane taken away. Typically, our reliance on that thing is belittled on top of the violation, which only hurts and stresses us more.

Autistic meltdowns are what happens when the body and mind get too wound up from the stress, anger, and frustration. It’s never just one thing. It’s never just a sandwich cut the wrong way, or a flickering lightbulb, or one person being rude for no apparent reason. It’s all about how much we’re already putting up with.

person on watercraft about to go over waterfall- how it can feel to experience an autistic meltdown
Autistic meltdowns sometimes feel like going over a waterfall and hoping there aren’t rocks at the bottom. Photo by Jacob Colvin.
An Overall Burden

It’s the last metaphorical straw on the metaphorical camel’s back. Or, a more solid comparison might be the first World War. The war began after the Archduke Ferdinand, the heir to the throne of the Austro-Hungarian Empire, was assassinated. If you ask most historians, they will tell you this incident was the spark for the World War. But it was not why the war began.

There was, in fact, a great deal of tension between the European countries at the time, as well as an ongoing arms race and some smaller conflicts called the Balkan Wars. The Archduke’s assassination did not cause these circumstances. Rather, it was likely the opposite. Because of all the circumstances around the assassination, the repurcussions devolved into the largest war the world had ever known.

This building of tensions, with specific incidents that paved the way, is very much how I experience meltdowns. Except the incidents are much less notable than an arms race and the Balkan Wars. They’re less notable because they happen every month, every week, sometimes even every day. In small but meaningful ways, the world and the people around me cause me suffering, and that suffering builds up over time.

Personal Examples

In my own life, it’s things like my spouse leaving piles of dishes in the sink for a day straight. (This is either because he doesn’t see them, or because when he does, we’re just heading out the door.) It’s ducks cackling loudly at 2am or landscaping machinery at 7am, waking me from badly-needed sleep. It’s trying to have a conversation with someone, only to see them giving you the “what a weirdo” look or being rude for no particular reason. Or someone choosing to pull their mask off their face indoors mid-pandemic, essentially saying that their personal choices are more important to them than other peoples’ lives.

It’s babies screaming because they’re hungry or wet or suffering some kind of sensory overload themselves. It’s stupid store policies that demand their employees greet every customer at the door whether they want to or not. (These add an extra, very unwanted, social interaction I don’t want to handle and don’t know how to handle to every shopping trip- ugh.) It’s even stuff that’s really only my fault, like people I vaguely know greeting me by name and the ensuing panic attack when I realize my face blindness has once again screwed me over- I have no idea what their names are.

Maybe most lastingly, it’s painful miscommunications between me and people I love. Things that turn into boomerang memories. Stuff that sticks with you just to torment you later. Words people can’t or won’t say to you because you were supposed to know already, and didn’t. Uncommunicated expectations, like criteria set up specifically to make you fail. Family and friends that turn away from you. Assumptions about what you meant, all while they ignore what you actually said.

Inescapable

And over all of it looms the indelible knowledge that all these misunderstandings are your fault. Even though they’re not: the research shows us that autistic people interact just fine with other autistic people. Communication is a two-way street. If neurotypical people were truly so wonderful at communication, they would have no issue making themselves clear to autistic people, and the problem would only be autistic people communicating back. But that’s not how it is. The communication failure is on both ends.

This failure on both sides is a known fact. But in the same way we’re told that women can’t be beautiful unless they’re impossibly thin, the people and systems around us insist that every failed interaction is the autistic person’s fault. That everything would be fine if autistic people just disappeared. It’s hurtful, painful, and for many of us, inescapable. Like the ridiculously unhealthily thin standards of beauty for women, and the impossibly chiseled abs on male models (achievable only by being dehydrated for days at a time), this toxic mentality becomes internalized.

With all of that hanging over us, it’s no surprise that it all becomes too much sometimes. And we haven’t even started adding in the things that typically stress people out, like paying bills, job hunting, commutes, any form of public speaking, or other large life events, like moving, the death of a family member or friend, or living in a global pandemic.

Autistic meltdowns are a natural reaction to the building stress of living in a world not designed for us, among people that don’t understand us and often won’t try to. Punishing us for having them solves nothing. Yelling at us only makes them worse. Instead, please recognize why we’re upset. Don’t get angry or defensive or upset with us. As the article’s author says, a dark room, a cool drink, and clear, simple communication are your best bets.

Reading the Research: The Autism Service Cliff

Posted on by Realistic Autistic

Welcome back to Reading the Research! Each week I trawl the Internet to find noteworthy research on autism and related subjects to share with you. Along the way I discuss the findings with bits from my own life, research, and observations.

Today’s article serves as an introduction to the autism services cliff. This is what people call the sudden drop-off of services after the autistic person graduates or ages out of high school. You see, there are typically a lot of therapies and services offered through schools. Things like a one-on-one aide, or speech and language therapy, or occupational therapy are typically managed and implemented by the school.

Take the school out of the equation, and the autistic person is left with nothing, or almost nothing. Because of this sudden loss in services, autistic people often struggle at the transition between high school and adulthood. Some autistic people, like me, still manage to land on our feet. Others try very hard but still don’t succeed in the long term. The parents I’ve spoken to often talk about failed attempts at college, or long strings of jobs held for only a month or two. It’s not all stories of failure and crushed hopes and dreams, but there’s certainly enough of those to dishearten someone quickly.

This autism services cliff typically strikes between ages 18 and 26. Like a lot of things in the US, the maximum age someone can stay in school varies by what state you live in. In my home state of Michigan, that age is 20. Even before that age, though, the difficulties can begin with the loss of child Medicaid.

Transitioning to adulthood doesn’t necessarily mean losing Medicaid for good, but the requirements are significantly different. The rejection rate is very high. When you apply, bring a great deal of perseverance and the expectation that you’ll need to try at least twice. Neatly organized documentation of the disability and the need for services across years of the person’s life helps a lot.

This is why a Medicaid waiver, such as the ones mentioned in this article, can be so valuable. They can continue the autistic person’s Medicaid services into adulthood without disruption. Keeping these autism services and structure over the transition to adulthood can be incredibly helpful to an autistic person’s wellbeing. But even beyond direct services and Medicaid, a lot of structure is simply lost after you leave school. You can’t count on the easy exposure to groups of your peers any more. Nor is there usually free transportation to activity hubs with a variety of options. And now you need to both find and pay for sports facilities and other programs.

The only comparable organization is church. Like schools, churches can offer structure and groups of peers. Some churches offer small group Bible studies or household groups. Some churches may have simple sports equipment, such as a basketball hoop, or a field in which a pick-up group might play soccer or frisbee golf. If nothing else, a church can be a place for autistic people and our families to find structure, activities, and community.

Personally, I’d like to see a universal healthcare replace Medicaid. One of Medicaid’s typical features is the requirement that the receiver be painfully poor. Working part time at minimum wage can be enough to disqualify you, depending on which state and program you’re in. I don’t know if you’ve noticed, but part time jobs, even those that pay above minimum wage, are rarely enough to live on.

Instead, I’d rather have a healthcare that provides for everyone. If a family needs respite care, they should have it. If an autistic person needs help making a schedule or getting a job, that should be available. I don’t feel like we should make people present 20 pages of documentation to prove their need. That’s just another way of punishing people for existing. It doesn’t make the need go away, it just makes the person suffer for having the need.

Personally, I think punishing people for existing is pretty much inexcusably evil.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter! There are links and comments on studies that were interesting, but didn’t get a whole Reading the Research article about them.)

Book Review: Asperger\’s Syndrome: Helping Siblings

Posted on by Realistic Autistic

The Visual Guide to Asperger\’s Syndrome: Helping Siblings, by Alis Rowe, is a plainspoken children\’s book-sized publication focused on helping parents help siblings of autistic people adjust and thrive.  I found this book in the autism section, not the children\’s section, but it\’s pretty clear from the font size and pictures where it\’s meant to go.  At less than 100 pages in large sized font, it\’s not a long read. 

I picked it up anyway because this is a vastly under-served and under-recognized need.  There are hundreds, if not thousands of books geared towards educating parents and professionals.  Even books specifically focused on other autistics, often written by the same.  But very little has been done to help siblings of those on the spectrum cope with, say, the resentment of regularly being overlooked in favor of handling the autistic child\’s special needs.  

Sometimes, in the stress of everything that has to be done to manage the finances, support services, and even themselves, parents miss things.  These things can include their own self-care and wellness, and it can also include making time for doing things with just the sibling(s).  This is entirely understandable- after all, every autistic child is different, so there is no one \”do this and everything will be fine\” guide.  Children are already challenging, even without factoring in unusual developmental patterns and the need for support services, specialized learning, etc.  

Though all this happens unintentionally, it can be really hard on the neurotypical sibling(s).  Anger, embarrassment, jealousy, and frustration are common.  If autism isn\’t well-explained to the child, confusion and misunderstandings about why the autistic child is treated differently may result.  

This book tackles the job of pointing out common pitfalls as well as providing answers and suggestions as to how to address each problem.  It lists and addresses specific concerns and feelings a sibling might have, which I thought was useful as well as enlightening.  

One thing I particularly appreciated was that the book spends time explaining the difference between a tantrum and a meltdown, which is an exceptionally important concept for family to understand.  For the unfamiliar: tantrums are goal-oriented.  The person throwing the tantrum wants the attention, or wants something (like candy, ice cream, a toy, etc), and when that want is met, the tantrum ends. 

Meltdowns, on the other hand, are a response to overstimulated senses (like loud environments) or other adverse circumstances, and only end when the person has calmed down.  The two behaviors look superficially the same, especially to someone unfamiliar with the person, but should be treated very differently.  

Read This Book If

You\’re a parent of an autistic child with at least one other, neurotypical child.  This is a tightly focused, easy-to-read book meant to guide parents in helping both their autistic child and their neurotypical child(ren).  It lays out important basics as well as very specific concerns and feelings a sibling might have.  At less than 100 pages and in large, easy-read font, this is a good starting place for a parent to begin with this important, often sidelined, subject.  

Book Review: Asperger’s Syndrome: Helping Siblings

Posted on by Realistic Autistic

The Visual Guide to Asperger’s Syndrome: Helping Siblings, by Alis Rowe, is a plainspoken children’s book-sized publication focused on helping parents help siblings of autistic people adjust and thrive. I found this book in the autism section, not the children’s section, but it’s pretty clear from the font size and pictures where it’s meant to go. At less than 100 pages in large sized font, it’s not a long read.

I picked it up anyway because this is a vastly under-served and under-recognized need. There are hundreds, if not thousands of books geared towards educating parents and professionals. Even books specifically focused on other autistics, often written by the same. But very little has been done to help siblings of those on the spectrum cope with, say, the resentment of regularly being overlooked in favor of handling the autistic child’s special needs.

Sometimes, in the stress of everything that has to be done to manage the finances, support services, and even themselves, parents miss things. These things can include their own self-care and wellness, and it can also include making time for doing things with just the sibling(s). This is entirely understandable- after all, every autistic child is different, so there is no one “do this and everything will be fine” guide. Children are already challenging, even without factoring in unusual developmental patterns and the need for support services, specialized learning, etc.

Though all this happens unintentionally, it can be really hard on the neurotypical sibling(s). Anger, embarrassment, jealousy, and frustration are common. If autism isn’t well-explained, confusion and misunderstandings about why the autistic child is treated differently may result.

This book tackles the job of pointing out common pitfalls as well as providing answers and suggestions as to how to address each problem. It lists and addresses specific concerns and feelings a sibling might have, which I thought was useful as well as enlightening.

One thing I particularly appreciated was that the book spends time explaining the difference between a tantrum and a meltdown, which is an exceptionally important concept for family to understand. For the unfamiliar: tantrums are goal-oriented. The person throwing the tantrum wants the attention, or wants something (like candy, ice cream, a toy, etc), and when that want is met, the tantrum ends.

Meltdowns, on the other hand, are a response to overstimulated senses (like loud environments) or other adverse circumstances, and only end when the person has calmed down. The two behaviors look superficially the same, especially to someone unfamiliar with the person, but should be treated very differently.

Read This Book If

You’re a parent of an autistic child with at least one other, neurotypical child. This is a tightly focused, easy-to-read book meant to guide parents in helping both their autistic child and their neurotypical child(ren). It lays out important basics as well as very specific concerns and feelings a sibling might have. At less than 100 pages and in large, easy-read font, this is a good starting place for a parent to begin with this important, often sidelined, subject.