Thursday, January 12, 2017

Autism Is Not a Shell Surrounding a “Normal” Child

Sparrow R. Jones

Girl emerging from a tunnel
Photo © Ian D. Keating, Creative Commons License
[image: young African-American girl emerging from a tunnel]
It’s the gleaming longshot hope that refuses to die: the idea that autism is just a shell surrounding a “normal” child who can be coaxed out with therapy, or even simply outgrow the shell and step out of autism on their own.

It gleams and glistens and tempts parents who still don’t really understand autism yet.

And it damages your relationship with your children.

Yes, I know that’s a bold statement. And I know it may upset you that I said that.

But I also know that you love your children dearly, fiercely, desperately. I know that you would give anything for your children. I know that you are trying to secure the best for your children, and while your hoping beyond hope for a cure for your Autistic children is wrong and damaging, it comes from that deep, deep love for your children that pushes you forward into every uncertain day, hoping and praying that you will find that magical thing or mystically perfect combination of things that will make your child stop being Autistic.

It’s time to stop doing that now.

I’m going to take you on a little journey through autism, to try to help you understand why hoping for your child to recover, or go into remission, or be cured is both a waste of the precious time you could spend learning how to better understand your autistic child, and also harmful to your child-parent relationship -- not to mention damaging to your child’s self-esteem and mental health.

I’m not here to judge you. I know you love your child, and are striving to be the best parent you can be. I wouldn’t bother talking to you at all if I didn’t already know those things. But if you’re still beating the bushes for a cure for autism, I hope you will listen to me, and think carefully about what you are doing and why you are doing it.

Research and articles regularly come out that stir up this hope and longing in parents.  The figure changes from article to article -- sometimes it is seven percent, sometimes nine percent -- but there you are, reading your favorite magazine or online forum, and the article pops up like a fist to your gut: some children outgrow autism, it says. Or maybe it says that 40 hours per week of a therapy cures some Autistic children. Maybe it’s a diet that helps some percentage of children start speaking and smiling, after everyone had given up hope. You don’t even have to go looking for these articles, right? These words of hope come to you like iron filings attracted to a magnet, or like heat-seeking missiles. It’s really hard to ignore, am I right?

Here’s the latest article going around: Compulsions, Anxiety Replace Autism in Some Children, at Spectrum News. The headline pulls you in, and right away you read that “an estimated nine percent of children with autism achieve a so-called ‘optimal outcome.’” Before you even get to the next sentence that explains that almost every one of those children go on to develop mental health conditions later in life, you’re off, down the rabbit hole, eyes bright with hope, and eager for clues about how your child can be one of those lucky nine percent.

Remember, I’m not judging you. Actually, my heart goes out to you. You want your child to have the best chances in life and you still feel that your child will have a better, easier, happier, more successful life if your child is not Autistic. Snake oil salesmen who capitalize on your love and fears will take advantage of articles like this, to keep you distracted and chasing the cures they happen to sell, instead of fully embracing your Autistic child for exactly who they are, exactly how they are, right now in front of you, not broken, not needing to be fixed, but needing support and every ounce of love your heart can pour over their head in an anointing of acceptance.

Because there are a few things that are not immediately obvious about that rabbit hole.

Autism is, typically, a genetically-determined and life-long non-mainstream “wiring” of the nervous system.

Autism is in your child’s DNA, brain, sensory organs. It is characterized as pervasive, because it is in every cell of your child’s body.  Autism is so much a part of who your child is that many of us Autistic adults who are able to communicate, and who choose to talk about being Autistic, will tell you that it hurts us to hear or read phrases like “fight autism,” because it feels like people want to fight us.

Being Autistic makes me see things differently from how most people see them, and interpret what I have seen differently from them, too. I hear things differently from how non-Autistic people hear them, and interpret those sounds differently. Sensations against my skin that others may love are painful to me, while other skin sensations that I seek out are unpleasant for most people.

To “remove” autism would require completely re-structuring and re-wiring our brains, nerves, sensory organs. Think about what it takes to change sensory organs: surgery for near-sightedness, surgery for cochlear implants. How would you change someone’s taste buds? There is no surgery for changing how things feel against the skin. And these are just sensory organs -- what of the nerves that connect those organs to the brain? What of the brain itself? This is a rabbit hole you want to avoid stepping into.

“Removing” anything interconnected with a person's entire nervous system is a challenging and risky proposition. You cannot cut autism out, and I shudder at the thought that anyone might even try.

Trying to remove it with behaviorism treatments is not the answer, either. Besides, if behaviorism were powerful enough to “cure” autism, why haven’t you been able to use it to quit smoking, jog five miles every day, and stop getting into pointless little arguments that chip away at your relationships with people you care about? Okay, maybe those aren’t your habits. Maybe you want to stop drinking three bottles of wine every week, or get up twenty minutes earlier every day. Whatever changes you’d like to make in your life, think about how much you have struggled with them, and now try to imagine using willpower and behaviorism to change pretty much every single thing about who you are and what you do. Everything, from how you communicate to how you eat, walk, interact with others, jog your memory, spend your leisure time ... everything.

Just the thought is exhausting, right?

So why would you want to do that to your child? Do you think your child is going to succeed where you have failed because they are younger and more malleable? Do you think they will succeed because ABA is so powerful? If that’s the case, why not sign up for some ABA yourself, to help you get those reports in to your boss on time, or improve your parallel parking?

You don’t need to actually answer that question; it was rhetorical. But I want you to think about it, because many of the therapies promoted as “curing” autism are dehumanizing, and damaging. If you would not let someone do it to you to help you drop your bad habits, or pick up new good habits, don’t let someone do it to your child. If you wouldn’t let someone do it to your child who is not autistic, don’t let them do it to your child who is Autistic. I have actually seen professionals debating among themselves about whether children with autism are capable of feeling pain or not. These are not the sorts of people you want meddling with your child’s brain, or body, or emotions.

Not all therapies are bad. I have seen some great music therapy, drumming therapy, surfing therapy, horseback riding therapy, swimming therapy. I also marvel at the terms used: When your child who is not autistic takes horseback riding lessons, they are taking horseback riding lessons. When your Autistic child takes horseback riding lessons, it’s animal-assisted therapy. (That said, if your insurance will pay for your child to have surfing lessons that your child is really enjoying, but only so long as you call it therapy? Call it therapy and let your kid go surfing.)

But traumatizing therapies are only part of why the Spectrum article found that of the twenty-six children in the cited study who lost their autism diagnosis, twenty-four of them had been treated for a psychiatric condition, and twenty-one of them were diagnosed or diagnosable with a mental health condition. The article also speculated that the study results indicate “children who lose their autism diagnosis would benefit from continued care.” There doesn’t seem to be a connection made between the way the diagnosis was lost, and the emotional condition of the children afterwards.

If you spend hours every day engaged in frustrating therapies that lower your sense of self, your self-esteem, and your autonomy, and you will end up with mental health problems as a result. In some of those cases, I can guarantee you that the same behaviorist training that taught those children how to mimic non-autistic people also taught those children that they are wrong and flawed and damaged, and will never be fully accepted or get the basic things they need, until they learn how to pretend to be someone they are not.

And the strain of that pretense is damaging, too. Years of pretending to be not-autistic leads to autistic burnout -- a mental health breakdown that can even include a loss of daily living skills that had previously been mastered.

I have experienced autistic burnout myself, and I have watched it in others.  It can be mild, or it can be devastating and crushing. The harder an Autistic child, teen, or young adult tries to crush themselves into a fake non-Autistic person, the harder they crash and burn when they hit later adulthood or middle age.

Parents, any wish for an autism cure is incompatible with the hard crash of autistic burnout. Do not trade your child’s future life for an apparent cure in the present. You cannot “un-autistic” a brain and nervous system, and attempts to squeeze your child into someone else’s mold are going to have to be paid for eventually -- and that price will be wrought in tears and blood and lost jobs and broken marriages and worse.

Those “optimal outcomes” the Spectrum article mentioned? You might want to read what Steven Kapp and Ari Ne’eman had to say about how optimal they actually weren’t. And those outcomes are just the beginning: I want these researchers to do the ethical thing, and check back in with their “optimal outcome” patients in another 10, 20, or 30 years. In the meantime, take my word for it. I’ve watched a lot of “outcomes” in my friends of all ages, and autistic burnout is not something you want to set your child up for.

Chavisory, writing about this same article on trading autism for anxiety, puts it so well:
“There’s something incredibly ironic and cruel about considering an “optimal outcome” for autistic children a future in which we suffer from anxiety, depression, and a host of other psychiatric illnesses “instead” of being allowed to grow up to be healthy, happy autistic people.”
And happinesss, dear parents, is what is really at the core of your hope for a cure, right? You want your children to grow up to be healthy, happy people, but you cannot see how that could possibly be compatible with being Autistic.

Take a leap of faith, and believe me when I tell you that it is possible to be healthy, happy, and Autistic. Make this the goal for your child. Not a cure for autism, but a healthy, happy child. If your child has seizures, work on getting them under control. If your child has digestive difficulties, work on finding a diet that doesn’t upset their stomach, and find a reputable gastroenterologist (not someone who tells you that “healing the gut cures autism” because it doesn’t and you’re risking your child’s health when you patronize those sorts of doctors) to help you figure out if there are other medical issues going on. If your child has trouble with sleep issues, find a doctor who can work with your child’s sensory needs to conduct a sleep study, and devise a treatment program that your child can adhere to without pain.

Stop trying to remove your child’s autism, and focus instead on helping your child be healthy and happy in the ways that make the most sense to your child while honoring your child’s life. Trying to mold your child  into a child they are not, as if they were wet clay, is a sure path away from a healthy and happy child. Accepting autism, and loving and helping the child you have, as they are, for who they are, without shame or regret, is the first step on the path to helping your child blossom into a healthy, happy Autistic adult.

Now, go and show your beautiful Autistic children all your love! They do not need to be cured. But they do need to be loved and accepted and supported and mentored. Help them overcome life’s obstacles as themselves. Keep the children you love. Do not damage them, or risk your relationship with them, by trying to turn them into anxious strangers.

Thursday, December 22, 2016

How Visual and Literal Thinking Can Shape Autistic Experiences

Patricia George

Literal Thinking
[image: Two stills from the movie Singin' in the
Rain: Top: Gene Kelly as the popular actor Don
Lockwood being mobbed by fans, with white
overlaid text reading, "Hey, Cos, do something.
Call me a cab!" and bottom: Donald O'Connor
as Cosmo Brown, speaking nonchalantly with
white overlaid text reading, "OK, you're a cab."]
Before starting school, and before Mom remarried when I was five, it was just me, Mom, Grandmother, Grandfather, and a few other beloved close family members (my biological father was out of my life before I could remember him).

I didn't know how different I was from other people back then, not really. I felt different somehow; I always have, as though the most important secret in the world was whispered in my ear the day I was born, plus I just knew stuff even though I couldn't express that knowing very well. I always felt like I was a few seconds ahead, or behind -- but never quite in sync with -- the people around me.

Grandmother mostly raised me in the early years, and she really got me. I would wager real money that she was Autistic, too. After all, reproduction causes autism! Or did you think that we autistics were hatched? The genetics behind autism and inheritance are now so obvious to me.

My world drastically changed when Mom remarried, and my stepfather became part of my life. That change  started to reveal to me, and to others, just how different I was from other kids. It also exposed just how literal my thinking is. And it showed how dangerous that form of thinking can be, when those around me didn't understand how my mind worked, or how my thinking was impacted by my visual thinking.

My stepfather was different from anyone who had previously been part of my life, and we couldn't seem to get each other. I seemed to make him particularly angry because I responded so literally to his instructions, just as I always had before he was part of our family. Other adults were starting to get angry, as well. Because I'd do what they were literally asking me to do, I'd get it wrong.

None of the people who were exasperated with me recognized that how I do and don't process things is radically different from most of the rest of the population. Even though I could talk perfectly well (I didn't shut up, actually, I was hyper-verbal), and appeared "normal" in every other way. But I kept getting in trouble, and things like what I am about to describe kept happening.

(And can I ask a favour? If you are reading this, and you are a non-literal/non-visual thinker, or your child or student or client is, and you feel the need to tell me that non-literal people do these things too? Maybe, don't do that. Because that erases the fact that my actions were and are a direct result of my autistic neurology. Thank you.)

One day, my stepfather took me on an errand. It was summertime, and I was, as always, anxious, because I seemed to get so many things wrong whenever I was with him. I told myself, "try extra hard today, Patricia."

So when he parked our car and told me No-matter-what do NOT open any windows or doors until I get back, my brain locked that in: No Matter What. Don't Open Windows. Don't Open Doors.

He was gone for long enough that I started to get quite hot. But my literal-thinking brain, which was complying with my stepfather's directions to the letter, couldn't let my body open a door or a window. It absolutely wouldn't permit me to disobey.

Now, my stepfather was probably only gone for fifteen minutes. But as we've learned from so much increased awareness about leaving pets in cars -- and how quickly that can be fatal -- it doesn't take long to overheat in that situation, even when one isn't covered in fur.

By the time my stepfather returned I was covered in sweat, crying, nauseous, and upset.
“Why didn't you open a window!?”

“You told me not to,” I squeaked out.

“But you could have opened a window!?”

“You told me not to.”
Once again, I’d gotten his meaning wrong. How? Because I hadn't yet gained the ability to read nuances and social cues, plus I didn't yet have the pictures in my head that I usually used to understand what people wanted.

What I mean by "pictures": As a visual thinker, I need a picture of something in my head to make sense of it. This is one of the many gifts of learning about and embracing being Autistic later in life. I understand how to find the words I need, to explain things so non-visual thinkers and I can understand each other better.

Judy Endow's article on visual thinking makes this self-knowledge come powerfully full circle for me, especially as I read how she opens her article:
“I think in colors. My thinking colors have sound and movement. When I hear spoken words my neurology automatically goes for the match -- a match for the words I hear to a familiar concrete picture of something in the world outside my skin or to an internal picture I have stored in my memory.”

Autism comes with wide range of sensory sensitivities. I recently heard being Autistic described as being in a constant state of osmosis. It feels like I take in everything around me, e v e r y t h i n g -- but that overwhelms and delays the processing of all that information. Much like a cache in a computer, the more pictures I am able to store, the quicker I can pull up relevant pictures to any given situation. It also affects how quickly I can process and respond.

It doesn't surprise to me that I started playing with, and asking questions about, my Uncle’s photo equipment when I was three years old, and taking my own pictures by the time I was five. If I were to survive in a mostly non-literal world, I needed as many outlets to expressing my literalness as possible.

Like many Autistic and neurodivergent kids, I have several co-occurring conditions that also affect the way I think. The one specific to my literal thinking is hyperlexia, which means I seemed to know how to read without needing to be taught, and read well above my age level. Before I even started school, I knew and could spell (and was fascinated by) huge and complex words. Numbers too. But none of those abilities helped me acquire or understand social skills. 

I was told, before I even went to school, to go look something up in the dictionary to understand it. And then I was quickly able to read books and encyclopedias. So literal me went ahead and did that in only a way an autistic person could!

And in those pages I learned how to fit in enough to get by, but not enough to not be bullied or have my real needs taken seriously. I was laser-focused on learning idioms and acronyms, on learning enough facts about anything I could, just so I could get through a basic conversation. 

Tasting Color. Photo © Paul C├ínovas
[image: Blue-eyed man biting into
a rainbow-colored slice of watermelon]
I loved and still do love idioms, even though they are a minefield for a literal thinker. (Guess what my mind is seeing right now? Boom!) I also have something called synaesthesia, which can cross-wire and enhance my senses: I taste sounds, I smell pictures, some numbers are friends and others are enemies -- it's an interesting facet of neurology, and something autistic people seem to experience more than non-autistic people.

I can vividly recall -- as if I’m there now -- looking out the kitchen window at my Grandparents’ house. I am perhaps six, and it is raining but also sunny, and there is a rainbow. It is the most delicious colour outside, and the contrast of light and dark and colour makes my head spin.
“NANNY!?” I bellow. “NANNY! Come look! It's raining and sunny at the same time!?”

“The devil is beating his wife” she says to me.
And I stopped in my happy little tracks.
“The what??”

“The devil is beating his wife,” she replied again, like I was suppose to know what the heck that meant.
“Why would the devil beat his wife??” I asked,  almost in tears.

“Because he is angry with god for the sunshine” she replied
That seemed to satisfy me enough to let it go for the time being.

Remember how I said I am certain my Grandmother was Autistic? Even so, she did things to amuse or horrify me ALL the time, like using visual riddles. I know she did it on purpose. I also know she did it to help me better navigate the world, using our shared similarities and her life experience to present information in a way that would help me in the long run. Now that I can see what she was doing, I think it was very clever, though I didn’t at the time.

For instance, I wouldn’t wear socks, not even on the coldest winter days. Sometimes I even went barefoot in the snow. So she told me about the time when she was a child and didn't wear socks in her boots, because socks really bugged her, too. Then she lost track of time while sleigh coasting in the snow, and by the time she came inside, her toes had started to turn blue and then black.
“So what happened to your toes?!” I asked, looking at her feet.

“They just get sore in the cold,” she told me, “But had I been out there any longer, they would have fallen off.”
I think my eyes opened so wide she could see her entire reflection in them. And the image of my toes falling off was enough for me: I made sure to wear my socks and boots in the snow after that.

I didn't do well with superstitions either. If you are a parent of a literal/visual thinker -- please, be careful with the superstitions. Our superb pattern recognition skills can mix with superstitions to result in deep paranoia. I had to work very hard on coping strategies, and get therapy, to move past the debilitating effects of a literal understanding plus a visual mind, since I had so little understanding or accommodation.

When supported, literary and visual thinking traits can be positives. I see/hear/taste the tiniest change in a pattern, which can actually save lives as when I smell smoke long before there is noticeable fire. Or hear a bolt drop. Or see something hidden among the leaves on the ground.

Visual supports are crucial, so autistic visual/literal thinkers have images to match their language. There was a line in Judy Endow's article that actually incensed me:
“We do not know when we are little that most other people think with words rather than with colors and pictures.”
That insight blew my mind (so right now I am seeing a volcanic explosion coming from the top of my head) and even took me to the brink of anger, in trying to wrap my head around the existence of a reality so different from my own.

How the heck does a person think with words!? Words are pictures and colours. They are smells and sounds. They are a memory preserved as a snapshot. I have an ever-growing rolodex of word-images in my mind that allow me navigate and understand this world, to process Life the way my neurology requires. It’s really perplexing to me that’s it’s not that way for everyone.

Several of the sayings my Grandparents shared with me became touchstones in my life. One in particular was my grandfather's “It takes all kinds.” I broke down those words the way I always did with his seemingly incomplete sayings or thoughts: I saw them as puzzles to solve. I’d search for the corresponding word-images, then use my pattern recognition skills to find the logic in them.  I combined that with research and asking questions, and would eventually find my way to a complete picture, which I could store -- and recall the next time I needed it.  

For me, “It Takes All Kinds” is the crux of inclusion: the acceptance of our neurodiverse society, and of neurodivergent persons. (I only got to know those big “Neuro” words in the last few years, since my autism diagnosis.) I've had to find ways to merge my literal and visual thinking with such word definitions, because learning disabilities like dyslexia and dyspraxia make it difficult for me to "get" them, otherwise, and I struggle with grammar as well as getting the words down physically in a way that I can recognize. I don’t believe I’d be close to the writer that I am, without literal and visual thinking guiding me to make pictures with my words.

For your part, and in making an effort to be inclusive, please always presume competence on the part of individuals whose neurology is different than yours, and also work toward recognizing the different routes brains take to process and expressing their experiences. Accommodating a literal/visual thinker isn't giving into weakness -- it is supporting and validating a literal way of processing life. Anything that invalidates or seeks to change that way of thinking will damage that person in countless ways.

I've experienced inclusion and validation and it makes such a difference. And it’s a difference that many really seem to be seeking in the lives of those they love. Please know our literal and visual view of the world has so much to offer to society, and the world.

To thank you for making your way through this, here's a yummy quote for the visual thinkers out there! I “see” you!
“A waffle is like a pancake with a syrup trap.”
-Mitch Hedberg