Neurodiversity

holding-hands

Crazy Like Us

My daughter is on the autism spectrum. She’s high functioning enough that you might not notice right away, but spend enough time with her and it’s hard to miss. The aversion to direct communication. The stumbling articulation. The repetition. The tantrums. It all adds up.

I have rapid-cycling bipolar disorder, compounded by severe generalized anxiety disorder and panic disorder. Most people who know me know this now, but for over a decade, I hid it under oscillating workaholic tendencies, party girl antics, and homebody inclinations. Even with medications and a treatment team and vigilant self-care, the struggle to stay balanced is a constant one. I’d been fighting for everyone else for years, and I’m only now learning how to set boundaries and stand up for myself.

Ava and I have different struggles, but in many ways, we are the same. We struggle to make eye contact under pressure. Our tempers are fast and hot. When things get overwhelming, we retreat to calm ourselves. But most importantly, we understand the world around us through stories.

When Ava was first diagnosed, one of the biggest hurdles we faced was her speech delay. Her mind was moving faster than her ability to communicate. It made it hard to understand how to best meet her needs, but as frustrated as we were, she was even more so. She would often end up distraught, only further obstructing her ability to get through to us.

But then we found a workaround. See, Ava’s memory was second to none when it came to her movies and TV shows. She might not have been able to put her thoughts into her own words, but she could recall scenes that conveyed what she was feeling and recite them verbatim. Over time, I realized that her rambling was not without purpose, and started paying closer attention. It got easier. Not easy, but easier.

When I was first diagnosed, I was frozen, terrified of the sound of my own voice. I felt like my mind couldn’t be trusted, like I was mourning the death of my former self. No one around me could really understand what I was going through, and I couldn’t find the words to explain it, which only made me feel more alone.

But then I retreated into fiction. I read voraciously, I binge watched television, I collected movie plot lines like a connoisseur of terrible cinema. I’d write awful poetry, pen trite short stories, begin novels that would never be completed. But it calmed me and inspired me. These fictional figures, whether they were from my mind or someone else’s, brought me back to my voice and cleared my mind. It got easier. Not easy, but easier.

Stories continue to play an important role in our lives. For Ava, it’s not just a manner of self-soothing, but a means of learning language, geography, science, history, math, and more. For me, it’s not just a form of self-care, but a way to explore the rapid fire ideas searing through my mind’s crossed wires and find organization in the chaos. Stories save us every day of the week, and twice on the bad days.

Not everyone understands our connection to stories. I can’t tell you how often I’m lectured as a result of my leniency with Ava when it comes to iPad and computer play. They’ll cite studies and experts who deride screen time for children without consideration for or knowledge of Ava’s history, ignoring the fact that autism manifests differently for everyone on the spectrum. And when I retreat into reading and writing with a fervor unmatched, the assumption is always that the screws have come loose. After all, exactly how productive or therapeutic can something as trivial as a blog actually be? God forbid I defend my parenting or self-care; then I’ve clearly lost my mind.

But the fact of the matter is that Ava and I are different. We will never be normal. We will always need to find our own way to navigate life. We have to travel our own path, critics be damned, but truth be told, the view ain’t bad from this road. Call us crazy if you like. I wouldn’t trade our crazy for the world.

And our story is only beginning.

Mike Huckabee

Mike Huckabee Solidifies Asshole Status

There are a lot of reasons to not like Mike Huckabee if you’re a progressive. He’s an extreme social conservative who’s terrible on subjects like reproductive justice and marriage equality. His understanding of the separation of Church and State is that he doesn’t like it and it shouldn’t exist. He continues to insist that climate change isn’t a real thing. That’s really only the tip of the iceberg. Like I said, lots of reasons.

But if you’re a progressive who makes an effort to be an ally on issues of race, gender, and more, you should be equally enraged that when it comes to attacks on neurodiversity, Mike Huckabee is an unapologetic jerk. As USA Today reports:

Republican presidential candidate Mike Huckabee came under fire Monday for using a disparaging reference to mental illness in describing a U.S. Supreme Court justice.

The criticism came from the National Alliance on Mental Illness, which took issue with a comment the former Arkansas governor made Friday on Des Moines radio-host Jan Mickelson’s conservative talk show.

Huckabee said Chief Justice John Roberts “apparently needs medication for schizophrenia” for his allegedly inconsistent opinions in two prominent cases last week.

Only an emotionally dead and illiterate tool would make such a statement. For starters, it shows a gross misunderstanding of what, exactly, schizophrenia is, based on factually incorrect stereotypes promoted in media and propped up by colloquial use of the term. Most frequently, it’s used to disparage someone with labile moods and seemingly divergent or rapidly shifting perspectives. This characterization would be laughable if not so inappropriate. As advocacy group Mental Health America explains:

Schizophrenia is a serious disorder which affects how a person thinks, feels and acts. Someone with schizophrenia may have difficulty distinguishing between what is real and what is imaginary; may be unresponsive or withdrawn; and may have difficulty expressing normal emotions in social situations.

Contrary to public perception, schizophrenia is not split personality or multiple personality. The vast majority of people with schizophrenia are not violent and do not pose a danger to others. Schizophrenia is not caused by childhood experiences, poor parenting or lack of willpower, nor are the symptoms identical for each person.

This isn’t the punchline to a joke. Individuals with schizophrenia comprise more than a third of America’s homeless population. Their symptoms can be so terrifying that they are sent into a deep depression that is too often fatal. As Schizophrenia.com points out:

People with the condition have a 50 times higher risk of attempting suicide than the general population; the risk of suicide is very serious in people with schizophrenia. Suicide is the number one cause of premature death among people with schizophrenia, with an estimated 10 percent to 13 percent killing themselves and approximately 40% attempting suicide at least once (and as much as 60% of males attempting suicide).

You’re not laughing now, are you? That’s because jokes like the one Huckabee made aren’t funny. They’re offensive, and more importantly, they’re dangerous. When mental illness is cast as something worthy of mockery, is it any surprise that people don’t seek out health? Is it really all that shocking that our leaders don’t take it seriously enough to fund the public health initiatives we so desperately need when diagnoses make such convenient political barbs? Can we blame the neurodiverse for feeling shame and despair as they try desperately to find their way to stability and fulfillment when we’re laughing at them for their courageous efforts?

Mike Huckabee is an asshole. And if you can’t understand why, then you are too.

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Depression, Germanwings, and Unmitigated Ignorance

From the moment the news about Andreas Lubitz’ struggles with depression broke, I knew things were going to get ugly in a hurry. When you combine tragedy with ignorance, you’re bound to hear a lot of stupid. A part of me (perhaps naively) had hoped that some of the fear mongering would fizzle out after a bit, but that hasn’t been the case. The news cycle has focused with white hot intensity on whether and when Lufthansa knew about Lubitz and his diagnosis, with one question being collectively shouted in their rage:

If he was depressed, why was he allowed to fly in the first place?

I’ve watched as otherwise reasonable people have defaulted to this position, shocked in spite of myself at the hubris it takes to ask that with a straight face. Why was he allowed to fly? You mean other than the fact that a mental illness diagnosis need not be a disability? Or the fact that depression, along with a slew of other diagnoses, is treatable and manageable? Or the fact that mental illness and violent or destructive behavior are not inherently linked? Or the fact that the assumptions prompting you to ask that question are not based in fact and contribute to the stigma that forces so many like Lubitz to not get the help they need?

Time for a reality check. You know who else struggles with mental illness? The people you entrust your lives to on a regular basis.

I’m talking about the bus driver who suffers from a severe anxiety disorder that gives him panic attacks but who still manages to get you to and from work every day. I’m talking about the police officer directing traffic whose seasonal depression drains her energy but doesn’t stop her from doing her job. I’m talking about the mother on playground duty who quietly wrestles with borderline personality disorder but makes sure your kid doesn’t put himself in harm’s way. I’m talking about the soldier lumbering forward under the weight of PTSD more so than the rifle he carries to keep you safe at night. I’m talking about the teacher with bipolar disorder who once contemplated suicide regularly before she found the right combination of meds.

Those fighting and living with mental illness are not some abstract threatening boogeyman. They are neighbors, friends, family members, civil servants, business leaders, and, yes, they are pilots. It is estimated that one in five individuals has a  mental illness. There are more than half a million pilots out there, per the FAA. Doing the math, that means there are plausibly more than 100,000 pilots flying the friendly skies while living with mental illness who will likely never crash a plane into the side of a mountain.

And we are not doing them or ourselves any favors with the way we’re approaching this topic.

People are legitimately asking these questions like the mentally ill are a scourge from which the public must be protected at all costs. There has been extensive discussion about improving mental health screenings for pilots — which is awesome in that mental health should be a priority in every line of work, but especially so in cases where you’re responsible for safeguarding lives. What’s not awesome is that these screenings are being framed as a method of exclusion. The idea of it is that if a diagnosis is present, you’re out.

It’s a terrible idea, in that respect, and for a couple reasons. First, such a policy doesn’t do much good. For all those confused about how Lubitz went undetected for all this time, have a chat with someone in your life who struggles with mental illness. Or take it from me, someone who was in the bipolar disorder denial closet for more than ten years: you get really good at hiding it, because it feels like the only way to protect yourself from folks like the ones raising hell right now. Unless someone is incredibly symptomatic, odds are they can BS their way through a cursory evaluation with a doctor who doesn’t have enough of a history with them to see through the act.

Second, mandatory mental health screenings for the purpose of exclusion has the potential to do a lot of harm. Knowing that those who fight mental illness get good at masking it, do you think threatening their jobs is going to make them more or less likely to be honest about it with a doctor? Would you be? If anything, using the results of these screenings in punitive fashion makes it far less likely that the people who need help most will seek it out. And we’re not just talking current pilots. Anyone who might have any high flying aspirations for the future may avoid seeking treatment now to preserve their career prospects. Nobody wins in that scenario.

Stigma isn’t the public concern at the moment, but it should be. Had mental wellness been a priority for Lufthansa, had informed policies been in place, had compassionate care been emphasized, Lubitz might have continued his treatment. He might have felt comfortable seeking help when things started to spiral. We might not be having this conversation right now.

You want to prevent this from happening again? Start with checking your ignorance before you add to the stigma that got us here in the first place.