Me, My Autism, and The Community

     Autism is a genetically inherited disability. It is extremely common for Autistic parents to have Autistic children. It is, in fact, more common for Autistics to give birth to Autistics than their non-Autistic counterparts—although admittedly it is not impossible for non-Autistics to have Autistic children. I am not a genetic scientist, admittedly, but I can tell you that as the Autistic daughter of an undiagnosed Autistic man (I know he’s Autistic because he is socially awkward, extremely obsessive and perfectionistic, struggles with time management, relies heavily on calendars and alarms in spite of being unemployed, struggles to not come across as angry when he isn’t, is extremely book smart yet forgets to eat or take his medicine, etc.) whose father is ALSO an undiagnosed Autistic (I know that he is Autistic because he’s a diehard atheist, has published a couple of lengthy books, has a PhD in marine biology, taught as a professor for years, can talk for hours on end about things that interest him… and he has some of the worst social skills I have ever seen. Ask my Dad why he will never eat pickled beets again. Or, just go to Molotov Med Cocktail’s Facebook page, and PM me asking about the story. I’ll be happy to tell you if you think you can stomach a gross story), I can say for certain that Autism runs in families.

     So, with that said, why are some Autistics suddenly pretending that Autism isn’t something you can inherit from your parents? Or better yet, why is it that when some “Autism” parents find out they are actually Autistic parents, other Autistic activists are quick to say “You are not Autistic.” There’s a saying in certain parts of the Autism community—“We are like your child.” And on some broader level, they are right. Both they and the children in question are Autistic. There is no denying that the Autistic activists in question share similar sensory sensitivities, social challenges, and accommodations required to get by in the world. But maybe we’re forgetting another solid piece of advice in the midst of all this—a saying just as true, which really applies to any disability—“If you’ve seen/met/heard of one person with Autism, you’ve seen/met/heard of one person with Autism.”

     One Autistic’s experiences will vary from another’s. A lot. And about the closest people we can get to being like them, are usually their parents, who might in fact be Autistic. But when certain Autistic activists start to argue with parents of Autistic kids (whether those parents are Autistic or not), words like “murder-apologist” and “ableists” get thrown at them. When those parents disclose their Autism, they are met with a mob of angry Autistics calling them liars.

    And let me be perfectly clear about this—that is fucking triggering for me.

     When my Tourette’s symptoms started at the ripe old age of 13, people asked me if I was “doing it for attention.” People talked about me behind my back, saying I was only pretending to have Tourette’s, or making my symptoms seem worse than they were. Not long after that started, I attempted suicide and began self-harming. Several times—with what I hope is my last attempt and act of self-harm ever at the age of 18. In other words, I don’t take it lightly when mobs of people tell people who just figured out they are Autistic that they aren’t Autistic. That, in itself, is ableism, and it’s the kind that nearly pushed me over the edge.

     The icing on the cake, however, is why I think these Autistics are telling these parents they are murder-apologists/murders-in-the-making/not Autistics. I think it’s because the parents are making some really, really good points, that goes against all of their black and white thinking. They don’t want to be wrong. They don’t want to admit that a certain Autistic-run organization is just as guilty as Autism Speaks of focusing their funds on all of the wrong efforts. I don’t want to “fight Autism.” I also don’t want to fight Autism Speaks. That is just as useless to me and other Autistics as trying to cure us.

     What is useful is providing Autistic adults the funds to live on their own. What is useful is providing coping mechanisms for Autistics—and no, I do not mean any of that bullshit like forcing eye contact or sensory discomfort in the name of therapy—I mean stuff like “How do I manage to find the spoons to make food, clean my house, go to work, go to school, and every other survival skill I need to get by?” It’s helping Autistics start businesses if they want to. It’s not spending all of the donations you receive on tearing down another organization that you fundamentally disagree with.

     Please understand I don’t think all, or even most Autistic activists are doing this. It’s just that the ones who are doing it are the loudest. And that’s giving Autism a bad name. I don’t want Autism to be known as “that disease that makes you a complete asshole to people who are on your side.” I mean, of course, it shouldn’t be known as a disease at all, but that’s the kind of ignorance we have to look forward to if we don’t start trying to have rational conversations that aren’t just a name-calling shouting match.

     So if I haven’t alienated you, and assuming you have spoons, I hope you’ll be willing to try to carry on in the community as peacefully as you can. I hope you will disagree with others as respectfully as possible. I hope we can mend things between us. Because if not, we’re kinda fucked as Autistics, aren’t we?

Regression

     People often talk about their own Autistic children, and how one of the key indicators of their Autism was an onset of regression around the age of two. That never happened for me in the classic sense—I learned to talk while I was young, and I kept my language abilities all throughout my years. There were meltdowns and shutdowns that have left me unable to find energy even for my own thoughts, let alone words, but I consider this different than being nonverbal. We hear all about Autistic toddlers who regress—but what we don’t hear about as often is the adults who do. That’s me right now. My life is a wreck.

     Let’s start with the basics. My hygiene is a major concern. I often don’t bath, and even less often do I brush my teeth. I know I need to do those things. I know that my health will deteriorate if I don’t. But I also know, as far as the tooth brushing thing goes, that my gag reflex gets triggered, and it causes me to have to stop brushing whenever I do. It’s painful. It’s tedious. And it raises my anxiety just to think about brushing them, even though I know my teeth need the extra care an attention. If I’m being honest, the bathing thing has more to do with forgetfulness. I forget how many days it’s been since I last did it. And the sad thing is, I actually enjoy baths. But it doesn't show in how I deal with them.

     Now, let’s get to the worst part… my apartment. The apartment I share with my husband. It’s a borderline hoarding situation—and while I have no sentimental attachments to most of the stuff in our apartment, that doesn't change the fact that a big part of this mess is mine. Dirty dishes left uncleaned, garbage thrown on the floor, dirty clothes covering the floor so that you can barely see it. There’s stuff that has needed sorting through since we moved in here back in July, things that need donating, selling, throwing away… but we have such a backlog of household chores that we have to get through in order to even begin getting this place to look like a home. Our apartment is tiny—we don’t really have room to live like this. But we do.

It all comes down to anxiety, and spoons. My anxiety is crippling. I can’t even begin to think about cleaning this place up without having a moment of panic. I can’t think about cleaning ME up without panicking. It’s that bad. I don’t know what to do, other than just do it—but doing it is the hardest part.

Thanks for reading. To end on a positive note—even in this period of regression, there has, and will, be growth for me. I will come out the other side of this a braver, stronger, more independent woman than I ever was before. I will overcome, and when I do, the world will be better for it. I have to remember that my worth isn't in my failures—it’s in my successes, however small and trivial they may seem to others.

4 Years Clean

MASSIVE TRIGGER WARNING: SUICIDE ATTEMPTS, SELF-HARM, AMERICA'S MENTAL HEALTH SYSTEM, SWEARING

It’s January of 2014, and that technically means it isn’t Suicide Prevention Month. That’s in September, which also happens to be the month of my birthday and my anniversary. Truthfully, I’d usually much rather spend September celebrating my birth and the life I enjoy with my husband, than touch on that monster known as my past. However, January is much more appropriate for me. January doesn’t just mark a new year for me. It marks something so, so much more.

January 10th, 2010. I was stressed beyond my ability to cope. I was about to start my first semester of college in a week, and all I could think was how I wasn’t in the least bit prepared to handle it. It had been almost 2 years since my last suicide attempt. I didn’t care. I felt I was at the end of my rope. I felt I wouldn’t live up to everyone’s expectations. I felt like everything about me screamed failure. I felt like I didn’t deserve my boyfriend. I felt like I didn’t deserve anything—yes, even my right to live. I had given a speech years before, where I spoke about yet another one of my suicide attempts, (there were 4, total), and how I had so much to live for. In this dark moment, 4 years later, that didn’t even matter. What I heard coming out of my 14-year-old mouth was lip service, just words that sounded really deep coming from some kid with a history of self-harm. Words that said, “Don’t worry about me, I’ll be fine” and hid the message underneath of “I don’t know if I’m going to want to live to see my 21^st birthday.”

I didn’t want to live to find out what would happen when I finally let everyone down. I talked it over in my head a few more times, and finally made my choice. I walked back to my parents’ bathroom, grabbed a box of Benedryl, filled up a glass of water, and consumed the entire thing. I locked the door to my bedroom, and sent my boyfriend a text goodbye. I felt this was the best way to leave a suicide note, without anyone being able to stop me in time.

I was wrong. Very, very wrong.

You know, the mind has a way of forgetting extremely important details in moments of crisis. In this case, my forgetfulness saved my life. My boyfriend had my mom’s number. He was panicked. He did what any rational person in his shoes would have done, and called my mom. She wasn’t home, but answered the phone when she saw who was calling. He told her everything I had told him—that I had just consumed an entire box of Benedryl in a suicide attempt. My mom called my Dad, who was home with me, and as soon as he heard the news, he came banging on my door, and the gig was up. I was caught.

I was taken to the ER, and kept over night. I spent the entire evening explaining my very, very personal fuck up to complete and total strangers. I was stuck there, being forced to pretend that these people were asking these nosy questions out of any reason other than having it on file, to never be looked at, or seen by another person. They didn’t genuinely care about what happened. They were just doing their paid jobs as doctors, nurses, and technicians, which was to keep me from being dead.

I’m sure people would love to hear some touchy-feely story about how I did all of this, but came out the other side of this life event saying, “You know what? Life IS worth living.” No. You don’t get to tell my story. My story is way more complicated than some simple shift in paradigm. You want to know why I’ve been clean from self-harm for 4 years, come January 10^th? It wasn’t out of hope of a better life. It was out of realizing I was fucked. I was stuck here. I was somehow invincible to dying, and every time I tried to die, there was always someone there to stop me. Pretty depressing, right? Well, not entirely. I actually like being alive now more than I have in a long, long time. But please, don’t piss on my foot and tell me it’s raining. Sobriety for me doesn’t mean I’ve stopped thinking about hurting myself. It means that when I do, I ask myself a non-accusational, “why?” It means that I have those thoughts, and realize that I have 4 years under my belt—which would be time wasted if I tried my hand at self-harm again. It means knowing when I’ve reached my limit of what I can handle, and putting on my brave face as I try to take on America’s horrifically troubled mental health system from inside the walls of an inpatient unit.

There is nothing easy about my sobriety. There is nothing I can do in my darkest hours but volunteer to be a lab rat in the name of my own safety and sanity. And being sober means accepting that, owning it, and choosing not to die in spite of it.

If there is any one thing you should take away from this post, it’s this: if you are struggling with suicidal ideation, self-harm, or thoughts of self-harm, DO. NOT. DO IT. Not for the reasons your family and friends will give you—that they love you, that they’d be devastated if you died, that you just gotta try a little harder to be happy—all of that is just cliché, and probably not the words of wisdom you need in your moments of crisis. Here’s what I needed to hear: your suicide attempt may sound like a great idea to you right now. Your suicide attempt, should you go through with it, might even be successful.

Don’t assume it will be. Assume the worst. Assume you will wake up in a hospital bed, with a vague memory of the night before, and be surrounded by angry loved ones who want to know why you would do this to THEM. Yes. That’s how they see this. Not as your tragedy, but theirs. There is no shame like the shame you feel when people ask you why you tried to kill yourself. In their eyes, you just tried to kill someone they really care about. So expect anger. Expect rejection. Expect that you will have to spend at least 2 years trying to get people to trust you enough again to be alone with things that you could use to kill yourself with for 5 minutes, because every time I crossed the line into acting on those thoughts, that’s what fucking happened, one way or another.

Know that you aren’t alone. Know that you’re not wrong for being reluctant to seek intensive inpatient treatment for your problems, when your mental health system provides cookie cutter care for people of highly diverse backgrounds in crisis situations. Know that it’s an evil necessity sometimes to go to those places. Just make sure that when you do go, it’s on your terms. It’s better to be there voluntarily, allowing you to leave whenever you’re fed up with the BS/are properly medicated/no longer an immediate threat to yourself, than to be forced to stay until they’re satisfied with your progress, or your insurance runs out—whichever comes first.


Trust me. It’s worth it to hang in there just a while longer. You’re worth it, even if you don’t realize it. When you finally manage to come out the other side, you’ll be stronger and better than you could have ever imagined.