Thursday, January 12, 2017

Autism Is Not a Shell Surrounding a “Normal” Child

Sparrow R. Jones
unstrangemind.com

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.