Thriving Autisticly, Re: Vaush Twitter video

Posted on by Realistic Autistic
aerial photo of city

The Vaush Twitter autism controversy video. 10 minutes, 21 seconds. Stream of consciousness on the stated subject and responding to his followers’ chatter.

A friend sent me this video by a Youtube personality named Vaush who, like me, seems to be on the autism spectrum. He tackles a number of topics. This one is on the perennial “should autism be cured?” question, which seems to have popped up on Twitter again recently. Frequent readers of this blog will already know my answer to that question (absolutely not!), and Vaush agrees.

However, like me, he recognizes that autism is not some kind of perfect good. A diagnosis of autism can come with significant difficulties and negative behaviors. He names only a couple of these (trouble reading social cues and sensory issues), but I’ll name a few more: meltdowns, anger management problems, breaking things, diarrhea/constipation, depression, and anxiety disorders. You may or may not have these difficulties or behaviors if you’re autistic, but the chances are higher for you than for a neurotypical person.

Here’s the thing. These conditions and behaviors are not innate to autism the way the Vaush Twitter video seems to imply. You can see these conditions and behaviors across the range of humanity, from children to adults. Some are separate brain differences. Others are stress, anger, frustration, despair, anxiety, and pain responses. On average autistic people suffer more of these things than a typical human. And the tendency is to lump every “abnormal” thing about a person into whatever bucket is handy. In this case: autism.

When parents and professionals talk about autism, they are often including these things in the definition. I would personally argue these things are separate from autism. But regardless, reducing a person’s suffering is a worthy goal. So, to respond to the Vaush Twitter controversy video, I’ll be making a series on how to do just that for yourself or your loved one on the spectrum.

To Feel (and Do) Better

The first thing to point out here is that every person is different. The saying goes that if you’ve met one person with autism, you’ve met one person with autism. In this series, I’ll explain what works for me. Broadly speaking, a number of these things will likely help you as well. However, your specific nutritional/biochemical needs, sensory requirements, and social desires may be different than mine.

Also, all the things I’m going to list here are things you can personally control to some extent. I won’t be listing stuff like “educate everyone around you until they stop insisting you act neurotypical.” Some of the disability that comes with autism is socially-created. Our communication difficulties sometimes stem from neurotypical people being rigid about communication styles and behavior standards.

For example, neurotypical are very insistent on eye contact as an important measure of whether someone is paying attention. If you’re not looking at them at least 70% of the time (ideal is more like 85%), they start assuming you’re distracted, bored, not listening, or don’t care. They do this because that’s how it works for them (usually).

Autistic people, though, don’t necessarily engage that way. Some autistic people can’t process visual detail and audio detail at the same time. Telling them to “look at me while I’m talking to you” is insisting that they become unable to hear you. There are degrees of this, and some people merely listen better when not forced to process visual detail. Regardless, the problem here is the neurotypical expectation of eye contact. Left to our own devices, we listen in our own way, with or without the extra information found in facial expressions.

We can’t change other people. Only they can do that. We can educate and exist and show people they’re wrong by doing so, but they have to make the decision to be different. So in this series, I’ll focus on what we can do. Topics I know I’m hitting are food, movement, environment, and communication styles.

RtR: Burning Off Excess Energy

Posted on by Realistic Autistic
person playing black electric guitar

Welcome back to Reading the Research! 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 suggests a therapy for ADHD that involves zero drugs. Based on my own experience, I’ll expand it to include autism, anxiety, and depression as well. This wonderful therapy is called “movement,” and it can be free with the right strategies.

Movement. Not exercise. We’ve all heard plenty about exercise over the years, I’m sure. It’s very healthy. It’s good for everyone. You should be doing it, here’s a big dose of guilt that you aren’t. Maybe every January 1st it’s in your list of “things I need to improve on.”

The thing is, when I picture exercise, it tends to be potentially boring things, like going to the gym or using some kind of stationary indoor machine. I don’t think I’m alone in picturing these things. If you love those things, that’s great! But many people don’t. I’m one of them. Going to the gym is boring to me. I’d rather be at home playing video games.

What is Movement?

Movement is a broader category. Movement includes things like going geocaching. Geocaching includes walking, going outside, and sometimes even hiking. But the point isn’t really the movement, it’s the fun of exploring, finding the cache, and being part of a larger community that does this activity.

Movement is dancing to your favorite songs, or playing frisbee golf at a local park with your friends. Movement is yoga classes with a buddy, joining a community sports team, or cleaning the house. It’s taking your bike instead of your car or public transit to places. Or playing active games with your kids. Even playing an instrument counts.

The study talks about the benefits of daily exercise for young ADHD boys, mainly. Kids need to move. They’re bursting with energy. Restraining them in school seats for hours is bound to result in unhappy and unfocused kids. This is honestly common sense. It boggles my mind we need to be told that exercise helps ADHD kids.

As I understand it, though, the focus of school has shifted from teaching subjects well to “achieving high test scores.” One after another, school districts have sacrificed the fine arts and hands-on classes, like music, painting, shop class, recess, and home economics, to funnel more money into those apparently all-important test scores. This was actually already happening two decades ago when I was in school. It’s only gotten worse since.

Why Movement?

Well, quite frankly, because I have less energy to spend being anxious when I have movement in my life. Movement burns off the extra energy, calming me down and letting me focus on what I want to pay attention to. I’ve talked about this before, but it bears repeating.

Right now I work a job that keeps me active for at least 2 hours a day, 5 days a week. While it definitely takes a toll on my body, mentally I’m calmer, happier, and more focused. I have no doubt the same is true for the ADHD kids in the study. And it could also be true for you, if you find a form of movement that you enjoy for its own sake.

(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: Following Ezra

Posted on by Realistic Autistic

Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son, by Tom Fields-Meyer, is a “my family’s experience with raising an autistic child” book from the father of that family. This is somewhat unusual. Usually it’s the mother that writes the book. That difference makes it more accessible to other dads, in my opinion. And unlike Not My Boy!, vast quantities of sports star money and fame aren’t involved. This makes the story more approachable to other families, I feel.

Cover of the book Following Ezra: toy dinosaurs in a line on a blue background.
Cover of Following Ezra, by Tom Fields-Meyer

I liked this book. Tom Fields-Meyer wrote Following Ezra in an easily-digestible, flowing narrative from his own perspective. The family is Jewish, so the story follows Ezra from early childhood to age 13. For those unfamiliar, at age 13, Jewish children celebrate their bar/bat mitzvah. It’s a coming of age ceremony and their first step to joining the larger Jewish community. It’s a very tidy place to bookend his life. Though I think we can all agree Ezra’s childhood is hardly over.

Neurodiversity Without The Word

Something I really appreciated about Ezra’s parents was that they didn’t try to shoehorn their child into some kind of imagined future. The book title itself, “Following Ezra,” clues you into this fact. They followed him. They didn’t metaphorically walk before him, pointing to all the best places to step. Nor did they dictate his path to him. Instead, they watched and listened and did their best to be supportive of him as he went.

The word “neurodiversity” is never printed in this book. Yet Ezra’s parents seem to understand that their son’s way of living is as valid as theirs. They presume competence rather than defining their son’s limitations to themselves. And they make the assumption that he will learn and grow. After the suggestion that Ezra might be autistic and being told he should grieve for the child Ezra didn’t turn out to be, the author puts it this way:

My answer will never be to mourn. It will be to pour love on my son, to celebrate him, to understand, to support him, and to follow his lead.

End of Chapter 1, Following Ezra
Not a Cakewalk

I should note, in all this, that Ezra’s childhood was nothing like mine. I followed the more “Aspergers” development path, where I developed skills unevenly but I did develop them over time. Ezra, on the other hand, experienced the regressive autism pattern. He developed, seemingly normally, until a certain point, and then seemed to lose skills and slip away. This is a soul-crushing thing to watch happen to your kid. It typically leaves quite a bit of pain in its wake.

Ezra’s parents are no exception, but they try not to dwell on it. They’re helped along by various experts that seem to understand what autism is and isn’t. A special-needs-friendly hair cutter, an experienced matron and Floor Time practitioner with her own child on the spectrum, case workers, school paraprofessionals, and a psychologist that could describe why Ezra seemed panicked by so many unpredictable facets of life.

They had to learn to cope with a child who rarely spoke at all for years. And then, of course, in true autistic fashion… when he did start speaking (around age 7), he immediately started asking honest (but socially inappropriate) questions like, “why are you so fat?” And while Ezra learned to read at an appropriate age, he didn’t demonstrate it in anything approaching a normal way. The final proof was when he followed the directions on a fire alarm during an event at the synagogue: “Pull down.” The book is full of stories like that.

His parents learn to live with his hobbies/special interests/obsessions, and then, to use them to connect with him and share in his life. They share in his celebration of the first day of every month. A pet dog becomes a way to help him connect with other humans at the dog park. There are all sorts of moments and and roundabout learning experiences.

Read This Book If

You’d like a dad’s eye view of raising an autistic child from birth to age 13. This book is written by a trained writer in a stable marriage. It’s fairly easy reading for a layperson, with a focus on the ideas rather than the fancy names and scientific details of things. “Following Ezra” embodies some of the best ideas of neurodiversity, but without ever using (or possibly even knowing about) the word. I enjoyed the read, and I hope you will too.

RtR: Attention Training For Autism

Posted on by Realistic Autistic
matrix background

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 describes a non-invasive form of attention training that looks promising for helping autistic people manage ourselves better and get higher grades in school. This wouldn’t be the first study to delve into autistic attention patterns. Their secret weapon to make it interesting? Video games.

I’m always a bit skeptical when I see the headline, “this new treatment will help autistic people!” You immediately have to ask a lot of questions. For example, “what exactly is this treatment targeting?” “Who benefits most from this?” And unfortunately, that always-relevant question: “where’s the money going?”

In many forms of ABA, the answers are “the autistic person’s autistic features,” “everyone around the autistic person at the autistic person’s expense,” and “insurance companies and clinic centers, in sums you could buy a car for.” Needless to say, this isn’t okay.

This article’s attention training, though? For the moment, the answers look like “the autistic person’s ability to focus,” “everyone, including the autistic person, at least academically,” and, because this is an experimental treatment, “research-focused universities, if any money at all is involved.” Relatively speaking, those are pretty good answers.

It’ll be worth watching to see if the makers of these attention training video games sell them in any form. Because they’re fairly simple games, it wouldn’t be difficult to include them in a school therapeutic setting. Most schools in the US have computers at this point. So purchasing the video games and having them available wouldn’t be difficult. Apparently some form of this is already going on in Europe and the Middle East. But it hasn’t made its way to the US just yet.

Video Games as Training and Assessment

Personally, I would already argue that video games can teach coping, organizational, and pattern-recognition skills. And they’re a known quantity to a lot of autistic people. Saying “here, play this video game” isn’t particularly intimidating. Unlike saying, “here, take this psychological assessment.” Or “here, talk to this new person about all the difficulties you’re having in school.”

Heck, that same kind of switcheroo was pulled on me recently. I applied for a job at UPS recently. At present, they aren’t doing traditional interviews. Instead, they’ve hired another company to do their hiring processes. It was basically automated. I entered most of my personal information. Then they sent me to a different website to “play some games that will tell us about you.” You play the “games” on a smart device or a computer.

I have a Bachelor’s degree in psychology and at least three functioning brain cells. I knew they were going to run psychological tests, and they did. Including some pretty basic, obvious ones that involve sharing money to test how generous and pro-social you are. In some cases they even told you what your results meant, broadly speaking.

The “games” verified that I am a team player, am not horribly selfish, vengeful, risk-prone or -averse, or egotistical, and possess basic information processing skills. So then I entered my remaining information and chose a start date. Theoretically that would have transitioned me right into their intro training. In practicality the hiring processes and the people with boots on the ground weren’t communicating very well. But I did end up starting the job properly with only a little extra delay.

(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: Soundproofing for Autism Sound Sensitivity

Posted on by Realistic Autistic
woman wearing black sleeveless dress holding white headphone at daytime

I can’t begin to stress how important soundproofing is for my daily wellbeing. Sound sensitivity in autism is a common experience. I’ve talked about sound sensitivity before in the context of noise-canceling headphones. As much as I love my headphones, it’s simply not feasible to wear them everywhere.

So today, thanks to Autistic Science Person, we get to talk about soundproofing. Or sound dampening, since getting a room to truly be silent is quite a feat. And not necessarily good for the people inside anyway. (Imagine always being able to hear your own heart beat and the blood rushing through your veins, and it might become a bit clearer as to why perfect soundproofing is not ideal…)

Sensory sensitivity is an issue I personally deal with every day. It mostly affects my hearing, and it works like this:

For a full 60 seconds, stop everything you’re doing. Listen to your environment. Are there people talking? Fans running? Appliances humming? Pets moving around the house? Geese, songbirds, or airplanes flying overhead? Is a TV on somewhere? Really strain to listen and identify every thing that’s making noise. If you’re able, write down every source of noise you can hear in that minute, no matter how quiet or irrelevant it seems.

Now, how much of that noise were you aware of before doing this exercise?

If your brain and hearing are typical, you most likely were only aware of the loudest thing or two in your area, unless it was relevant to you personally. Your brain, you see, filters out noise it considers irrelevant. This is generally a good thing. It keeps you from having to pay attention to stuff that’s not important. It’s a mental trick to save energy.

People with sound sensitivity don’t have that filter. Or if they do, it doesn’t function as well as it should. Because of that, we can easily become overwhelmed by loud noises or noisy environments.

Noise-canceling headphones and earplugs are the first and most obvious line of defense for autism sound sensitivity, but as Autistic Science Person says, they’re not always an option. Also, having a safe space to retreat to when overstimulated is incredibly important for my wellbeing.

My current home is fairly well soundproofed against noises from the neighbor we share a wall with. But there’s only so much you can do when the house is directly on the typical path to the airport. I honestly don’t mind the airplanes, for the most part. In my first apartment, I also didn’t mind the trains after I got used to them. These sounds are somewhat predictable and I can immediately identify them, which helps me manage always hearing them.

When I lived in apartment buildings, it was significantly worse. The soundproofing was minimal, especially when it came to the hallway. Doors slammed all the time. People yelled in the hallways. The buzzer to open the front door would go off at random intervals, and sometimes people would just buzz random apartments until someone let them in. Sometimes you could hear disagreements in other apartments.

I don’t miss all that extra noise. If I do the listening exercise I had you do before, I hear the air purifier fan, the hum of the HVAC, the hum of my computer, and that’s about it. Anything else, I choose to add to my environment. I’m presently bird-sitting for some friends, so that’s adding to my ambient noise. I also have a livestream (think like live TV) going to help make the bird comfortable. But I have it on very quietly so I can ignore it better.

I would still really like to have a space that’s decked out with acoustic foam, as Autistic Science Person suggests. Maybe, in time, I could rig the bedroom with that foam or with egg cartons or whatever the less expensive options are. Or create a quiet sensory box, like one autism dad did for his kid.

I love Autistic Science Person’s recommendations in their post. They have direct links to good sources for acoustic-dampening foam and guides for how to install it. They’ve also put together a Ko-Fi for families that really can’t afford to buy foam or have it installed.

I’ve personally bookmarked this post about managing sound sensitivity with autism, since I’ll want it for later. I hope you find it useful too.

RtR: Theory of Mind via Bilingualism

Posted on by Realistic Autistic
heavy rocky cliff on coast washed by foamy ocean

Welcome back to Reading the Research! 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 suggests a useful approach to teaching theory of mind and associated skills to autistic people.

Theory of mind, for those who aren’t familiar, is a person’s ability to understand how another person might be feeling. It’s the metaphorical “putting yourself in another person’s shoes,” and it’s also part of empathy. It’s also the ability to recognize other peoples’ knowledge, beliefs, emotions, and intents might be different from your own.

Social skills training, including teaching theory of mind, is a common service for autistic people, especially as we get older. Such training is expensive and complicated. What if there was a way to start it young, rather than playing catch-up later?

Surprise! There is: learning two languages at once. The skills needed to learn two languages and select which one to use when talking to people translate into regular practice with both theory of mind and executive functioning. Practicing those skills makes them easier. And the constant practice means the person will become fast and efficient in using those skills. As a bonus, they now have multiple ways to verbally express themself. If you can’t think of the word you want in English, maybe you can in Spanish or Chinese.

Other Benefits

This is more difficult to make happen in the US than it would be in Europe. But it’s still quite possible. Making connections with immigrants in your area can benefit your family and theirs. One of the lessons of neurodiversity is that diversity makes life better and richer. There’s a lot to learn from other cultures. And immigrants are often very giving, hard-working community people. Trading timeslots watching the kids so others can take some time off is quite normal for them. Plus it eases the burden on everyone.

A bilingual person also has more opportunities available to them when they grow up. It never hurts these days to be able to speak Spanish, especially in the service industry. In the business world, speaking Chinese or Japanese can be very helpful for talking to business partners.

I personally think that even if you grow up monolingual, like I did, it’s worth learning another language or two. Learning about other cultures and other ways of thinking and speaking can really help you see the world in a different way. And for some autistic people, living in another country is the ticket to being treated like a human instead of a weirdo. The locals are more forgiving of mistakes. Errors are simply attribute any strangeness to the fact that you’re foreign.

That’s an experience I’ve never had, but it’s something I really wish I had.

(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: I Am In Here

Posted on by Realistic Autistic

I Am In Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice, by Elizabeth M. Bonker and Virginia G. Breen, is a “my family’s story with autism” book with an emphasis on the author’s relationship with the Judeo-Christian God. As such, I’ll get a bit into my own beliefs during the discussion. As a note, the mother-author of “I Am In Here” is a privileged white woman with significant resources at her disposal, which is not uncommon in these books.

Cover of the book I Am In Here- a side head view of a white middle-school aged child in front of a grassy meadow with mountains in the distance.
Cover of the book I Am In Here

The book is somewhat deceptively titled, to my annoyance. Elizabeth, the autistic daughter, doesn’t seem to have had much say in how the book was organized. The account is very much from the mother’s perspective, and most of the writing is hers. “I Am In Here” is sprinkled through with pieces of Elizabeth’s poetry and prose, fitted in with the mother’s account of the growing up and life on the spectrum story.

I should note that Elizabeth is actually not the only autistic child in this family. Her older brother, Charles, is also autistic. But he’s rarely mentioned in this book. His autism is more like mine. It saddens me that his mother hasn’t used his experiences to help understand hers at all. They may be different people and have some different experiences, but what he struggles with may also be what she struggles with.

Finally, the author-mother of “I Am In Here” makes the typical medical/parental mistake of equating autism to “everything that’s wrong with my child.” She repeatedly wishes for “recovery from autism” for her daughter. Neurodivergent readers should try not to take offense. This is the wish of a mother that wants to see her daughter happy and free of suffering, not a eugenics-focused monster.

Caution: Lots of Christian Musings

When I was doing some advance research on this book, I ran across a particular complaint over and over. It was that, in the second part of the book, the mother loses the story of her family in musings about God and her relationship with her daughter. This is a very accurate complaint. People that aren’t religious or spiritual might find the insight into a suffering believer interesting, but it might also simply feel annoying.

Personally? I believe in God. But I also became annoyed. The author spends a significant amount of time desperately trying to pray her daughter into being able to speak. On one hand, I understand this. Speech is a mode of communication we (definitely including me) take for granted. It’s the default in typical human interactions. Any mother would want her child to be able to speak. If nothing else so that they could communicate with more people, faster. We live in a world that doesn’t give the metaphorical time of day to alternative communication methods, after all.

However… God is not a vending machine. There is no way to pray that’s so perfect that God is somehow forced to give you what you’re asking for. That isn’t the point of prayer. My understanding of prayer is that it’s to talk to God, yes, and ask for things you want… But mainly it’s to help you be mindful, reframe your thinking, and align yourself with His perfect and good plan for the world.

It saddens me that Elizabeth’s existing communication (typing and using PECS and a letterboard) feels sidelined and undervalued, compared to the focus on speech. “I Am In Here” overflows with her poetry. Yet the mother’s single-minded focus on speech implies a certain amount of inability to see past the neurotypical world and its values.

Why Suffering?

The author also struggles with the question of why suffering is in the world at all, which is a normal and entirely reasonable question anyone might ask of an omnipotent God. Especially when you and the ones you love most are suffering. My best guess is that God has opted to self-limit his power to respect the free will of all his creations. Unfortunately, free will means the ability to choose wrong. We have to live with the consequences of those wrong choices… but so does everyone around us, including God.

Autism is a neurological difference that often comes with medical conditions. The brain and body can develop differently because of any number of things. Some of these are air pollution (a choice made by people in industries), toxic substances in plastics (also people in industries), genetics (a product of peoples’ choice of mates), and other factors.

Besides the co-occurring medical conditions (which can be very significant, like epilepsy), autistic people are often disabled by those around us. We think and act different than neurotypical people. We stim when upset or when happy. The people around us often see these differences and reject or avoid us. Because they do that, our work opportunities are fewer and more limited. It reduces our ability to make and keep friends and connections. Our chances to thrive and develop our interests are fewer. This is why autism is a disability, even after you set aside the co-occuring medical conditions.

Speaking of suffering, the mother writing this book describes an incident when Elizabeth contracted a rare brain virus. The virus caused her a lot of pain, and in response she began a lot of self-injurious behavior.

Good Parenting

I want to highlight this incident because although it was horrible, the mother did a lot of things right. She listened to her child when she said it hurt, and differently than usual. She observed her child’s behavior and recognized there was a serious issue. The author didn’t accept “that’s just the autism” from medical professionals. Instead, she tried option after option, searching for every possibility until they found what was going on.

I also want to highlight something in particular in the next:

This was a dark time of trying medication after medication. We just tried to get through every day. Nothing helped very much or for very long. Some medications made her much worse and were immediately discontinued. Every time I placed a new pill in her mouth, I felt terrible because I believed we were not dealing with the root cause, only its terrible outward effect.

Page 228-229 of I Am In Here

This is a revelation I wish a lot more people would have. Because yeah, most medication prescribed today is only to treat the symptoms. Psychiatry is particularly guilty of this, but the overall field of medicine in the US is as well. Finding and treating the root cause should be the primary focus of healthcare, not simply easing the symptoms and washing your hands of the matter.

All too often with co-occurring medical conditions, the root cause is unknown. And in many cases, it’s quite expensive to try to find those causes. Which, as an aside, is why I think universal healthcare should be guaranteed for all people. You shouldn’t have to be rich to get good medical care.

Read This Book If

You’d like to experience a “my family’s story with autism” involving a nonspeaking autistic child and a mother with a significant Judeo-Christian faith focus. The title is deceptive. This book is not from the autistic child’s perspective. Her writing and poetry is included, but the mother clearly organized and directed the flow of the narrative. The author-mother also clearly makes the typical medical/parental mistake of equating autism with (almost) everything that makes her child suffer. Beyond that, “I Am In Here” can be a valuable, eye-opening read into the nature of faith, hope, perseverance, and transformation.

RtR: Parents, Take Care of Yourself Too

Posted on by Realistic Autistic

Welcome back to Reading the Research! 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 underscores, with data, what I typically tell parents of autistic people: Take care of yourself too!

I think most people can agree that raising a kid is difficult. Maybe there’s a few non-parents out there that wouldn’t agree, but personally, I have no doubts. Little humans are complex things, constantly changing and presenting new challenges. Raising a child may be fulfilling, but it’s also stressful.

You’re needing to manage yourself, hopefully as a good example for your kid. Then you also have to manage your kid and make sure they don’t accidentally hurt or kill themself in any number of creative ways. Finally there’s still your life, which includes work and relationships with friends and family. All at the same time. Being a parent is stressful. This is a true fact before you mix in neurological differences and medical conditions.

Adding Autism or Other Conditions

Once you start adding in those medical conditions and neurological differences, the pressure and isolation grows. Parenthood is a fairly open club, but when your baby cries basically all the time when they’re awake, the “shared experiences” feeling starts to drop off.

The frequent trips to the doctor, to specialists, even to the hospital, take their toll. Your own health and wellbeing fall by the wayside as you desperately try to meet the needs of your child with services, professionals, and whatever other tools are at hand. There’s financial strain, often. The most common form of martial discord is arguments about money. That puts additional stress on a parent who may already be struggling with managing appointments, doctors, therapies…

Basically, I’m saying that even if your kid doesn’t have the alphabet soup diagnoses with serious consequences, like cerebral palsy, serious heart defects, and genetic disorders), it’s a really tough life.

An Egotistical (but not really) Sign

At some point in my early teens, my mother had a little sign in the kitchen that read: “Mom’s happy, everyone’s happy.” As I recall, it came with a smiley face, and an admonishment to take care of yourself. At the time, I thought it was kind of egotistical. My dad, my brother, and I were all separate people with our own lives, concerns, and emotions. It seemed an absurdity to presume that one person being happy would sometime short-circuit everyone around them.

This book might be why she had that sign…

In retrospect, it was a pretty typical autistic black-and-white reading of the sentiment. I wasn’t wrong, mind you. Someone being happy near you isn’t going to snap you out of depression or solve a chronic health problem.

However, I wasn’t entirely right either. How people act around us can tip our moods up or down. If someone (coughmeusuallycough) is stressed and upset on a regular basis, it can tip a nearby person’s mood downward. Especially if they spend a lot of time with that person. Naturally, living with someone pretty much guarantees that situation. Over time, those effects can add up.

My mother suffered major depression for most of my childhood. While I couldn’t have told you exactly what was going on, I did know she wasn’t happy a lot. I had no knowledge of diagnoses, and only the faintest sense that things could have been different. But it affected me, too. I could sense when things were worse than usual. Her mood affected the overall mood of the house, and thus my mood.

Take Care of Yourself… Even if it’s Only for Your Kids

You are a better parent, friend, role model, teacher, and employee if you take time for yourself. Self-care is sometimes talked up to being extravagant. You can book a weekend at the spa, sure. Or a vacation somewhere without the kids.

But it doesn’t have to be expensive and lengthy. It can be five extra minutes on the toilet reading a magazine. Or 15 uninterrupted shower minutes while your spouse watches the kids. A cup of tea and a few minutes of journaling before your child is awake, or after you’ve dropped them off at school or therapy.

Taking care of yourself also means getting therapy for yourself, if it will help you. It means taking time for your marriage, friendships, and family outside childcare.

I recognize this isn’t an easy suggestion to take. Time is a scarce and precious resource for autism parents. But I promise you, your kid will be happier if you do.

(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: Conflicts of Interest in Autism Research

Posted on by Realistic Autistic
woman holding a magnifying glass

I ran across an article from Ann Memmott recently about conflicts of interest in autism research. The article proper is worth your read, and so is the research paper she was responding to, but I also wanted to give a bit of background in what she’s talking about.

Her main point is that a lot of autism research has been done by people that have no right to be doing it. Most notably, a lot of Applied Behavioral Analysis professionals have produced most of the research on the subject. Obviously they’re going to want to say, “Yes, ABA works!” If they don’t, they lose their jobs. (Alas, this is not the only problem with ABA…)

A more typical example of this kind of thing would be a teacher being asked to grade her daughter’s homework. Or a judge presiding over the trial of a family member or close friend. A doctor who owns stock in a pharmaceutical company taking a job to test their products. In each case, someone with an obvious bias accepts the role of an impartial judge.

Poisoning the Well

In science, we call this a conflict of interest. Because it produces inaccurate, unfair, and untrustworthy data, educators always teach avoidance of conflicts of interest. Authors should be honest about their conflicts of interest. As a failsafe, publishers should keep them honest by doing their homework on each author. Presently, my research suggests publishers don’t do that homework much, if at all.

Left unchecked, the compromised researchers may publish data they made up. The funders of the research can push for types of research that’s likely to show the results they want. Or, more subtly, companies can demand a certain type of analysis and interpretation of the research results. Finally, companies can try to suppress research results they don’t like. In all cases, greed and ego twists or hides the truth.

It’s worth noting that even if the researcher chooses not to act on their biases, it still counts as a conflict of interest. The issue is that they have that chance, and may unconsciously act on it. Even as they do their best not to in service of the truth.

A single false study can influence future research. The way science works, researchers pick topics to study based on the results of previous research. So if product A is effective according to a false study, future research teams (who may or may not be corrupt) may choose to study variations of Product A. We hope that the future teams’ data will show the truth, but that doesn’t always happen. The future teams may simply conclude that Variation 1 of Product A was not as effective as the original Product A.

This is how whole streams of research theory can be based in lies, and turn out to be pointless. This is, Ann Memmott says, exactly what has been happening in autism research.

Hypothetically

When I served on the DOD’s Autism Research Program as a community reviewer, each application had a section to disclose conflicts of interest. We had every possible option to avoid committing the offense, right down to, “I suddenly realized I have a conflict of interest, weeks after I’ve read, rated, and reviewed this paper.” The organizers were very studious about sending identified conflicts of interest out of the room before each application.

The thing is, I don’t know whether any research was done into the reviewers to be sure they were honest. I never had any conflicts, because I’m not a member of any institution that does research. Beyond my typical existing biases, like “please don’t commit eugenics and erase autistic people from humanity,” I don’t have the connections and relationships with such entities. I’d certainly like to think the government did its due diligence and made certain no conflicts of interest affected the reviewers, but I truly don’t know.

I strongly suspect the Department of Defense wouldn’t publicize a conflict of interest in their scientific reviewers. It would reflect badly on the organization. They would probably blacklist the lying scientist and not hire them again, but not publicly denounce the offender. If they did publicly denounce the scientist, that scientist’s reputation would be ruined, and their career would be over. If the conflict of interest was accidental, that’s a good scientist’s life and career ruined forever. Instead, the organization would likely hire a replacement and move on.

Generalizing

It’s not much of a stretch to assume prestigious publications might take similar courses of action. In the current culture, people seem to distrust organizations that admit they made a mistake. Rather than risk their own reputations, a publication might decide to simply let the conflict of interest slide. Assuming, of course, they even noticed it in the first place.

Also, the number of research articles and proposals submitted for publication has risen over time. It costs money and time to hire people to look into every potential author. In the industry, the norm appears to be simply taking the potential authors at their word. In high profile cases, a publisher might retract a published study and condemn the author. But this doesn’t happen often.

Moving Forward

Honestly, I’d like to see jobs specifically hunting for conflicts of interest in the publishing industry. Clearly, we cannot rely solely on the honesty of researchers. It would be wise to create an additional check on the publication process.

As I understand it, this problem is not specific to the autism research community. Pharmaceutical research suffers from a plague of corruption exactly like this. Which means many possible jobs. These jobs could be remote, requiring only an Internet connection and a knowledge of how to find people’s publishing history, resumes/CVs, etc.

Honestly, this is the sort of job I might like doing. It’s a job detail-oriented autistic people overall might thrive in.