When Talking About Autism, Maybe Listen to Autistics

Because I work in an autism related position, I spend a lot of time reading about autism. Which means that I often get a sense for what’s happening in the autism world. Lately there’s been a lot of hooplah around Steve Silberman’s new book Neurotribes, which for anyone interested in autism sounds fantastic and which I intend to read once my year of reading non-male authors is over.

Mostly the response has been incredibly positive. But unsurprisingly, many parents of autistic kids are coming out of the woodwork to talk about how shitty their lives are and how it’s not fair to talk about the good parts of autism. That may be an uncharitable interpretation of their words, but at this point I have reached a level of frustration with parents of autistic children that means I am uncharitable. I see posts that talk about how neurodiversity is whitewashing autism, revealing parents’ fear of their children, their attempts to restrain or fix their children, their conviction that their children must be miserable.

And I understand that raising a kid with autism is hard. Really hard. Just like…oh I don’t know, raising a kid. I understand that being neurodivergent is hard. Just like, oh I don’t know, life. It’s certainly more difficult because society is not set up in a way that’s conducive to living with neurodivergence, but that doesn’t mean that people with autism or other brain differences hate themselves or their lives. Some of them do. Some neurotypical people do. But do we consider it whitewashing life to talk about positive stories? No, we consider it part of life: mostly worth it, also hard.

But what really and truly pushes my buttons is the fact that I shouldn’t have to write this post. People with autism have spoken for themselves. I have repeatedly seen articles from individuals who are non verbal, “low functioning,” or with limited verbal abilities who have lived those same experiences that parents talk about. They talk about self injurious behavior, about being treated as incapable, about the same meltdowns and panic attacks that their parents see as an imposition on their lives.

And do you know what those people say over and over? They promote neurodivergence. They say that while there are difficult and trying times in their life, they have grown up to understand their strengths and skills as well. They say that while they may appear to be high functioning to the outside world, they have times and areas in which they are “low functioning,” but that doesn’t diminish their worth or make them want to get rid of their autism. They repeatedly talk about how much they hate the functioning labels that parents use to explain why their child is different, worse, harder.

But over and over parents say no, those are just the high functioning people. My kid can’t write an article like that, which means that these people don’t speak for my kid. Any person in the media is clearly not a low functioning person. They don’t understand.

And here is the point where I start to lose my mind, because when you say that people who are able to self advocate don’t count as truly autistic, you effectively silence all autistic self advocacy. You effectively say that each autistic self advocate only speaks for themself, and you prioritize the voices of parents over the voices of people who are actually on the spectrum.

None of this is to say that living with autism isn’t hard. I have my own neurodivergences and they can sometimes make my life hellish. But that doesn’t mean I want my brain to be different or that there are no positives. I hear the same thing from autistics. And I just want people to start listening to their honest, complex, shades of gray experiences.

Just like we advocate for when it comes to the experiences of women, or people of color, or GLBT people, or any other group that has started to speak out about their experiences. Just like we expect other people to listen to us when we tell them what our lives are like.

Identifying and Accepting When External Events Are Hard

Of late my to do lists have been piling up in a stressful way. I get home from work, and instead of jumping in to my blogging or editing, I just fall into bed and play Pokemon for 5 hours. Now I’m not one to knock playing Pokemon for 5 hours, but this is leaving me feeling like I’m being lazy and useless, and the things that I had intended to get done don’t get done…which means more on the list for the next day.

Of course my first impulse on seeing that is to get angry at myself. I berate my lazy self and ask why I can’t just do my work. I tell myself that I have tons of time, that I wasted time doing something unproductive. And I get more and more frustrated that I can’t seem to focus.

Now (totally unrelated) to all of this, I increased the dose of my antidepressants a few weeks ago and have been dealing with some nasty side effects since then. Serious exhaustion, twitchiness, anxiety, heartburn like a mofo (up to and including vomiting), and a complete inability to tolerate alcohol of any kind.

Wait, what’s that you say? Spending multiple nights puking and incapable of sleeping will affect one’s ability to get their work done? Messing with your brain chemicals takes time to adjust and might mean you have to cut back on other work for a while? Sometimes your body and brain require care that doesn’t allow you to keep going at your normal pace?

Of all the ironies in my life, I think my inability to recognize and validate my own mental health as an actual legitimate concern in my life is probably the best one.

Despite the fact that I’ve been bitching about these side effects to anyone who would listen for the past two weeks, it took until yesterday for me to realize that the reason I have felt so behind and had so much difficulty with my work recently is because making this transition is affecting me. And it took that realization for me to accept that I might need to take things easy until I can get my brain sorted out.

This is one of the most difficult things for people with mental illness, or at least I have witnessed people with mental illness struggling with it. We’re willing to accept when we need to make accommodations for ourselves, we can accept when our bodies start to give out, but so often I and others with mental illness discount external factors that might exacerbate our mental illness, or just make life harder. I’ve had multiple therapy sessions in which I walk in thinking I have nothing to talk about and halfway through my therapist will say “Sounds like there’s been a lot going on. A lot of stressors. How are you handling that?”

The question usually confuses me because I forget that much has been going on.

I suspect that for many others, just like myself, when you’re used to operating on full anxiety alert all the time, it’s hard to recognize when that anxiety really does match what’s going on around you. That means that it’s hard to cut yourself slack when the world really is making things harder for you. That’s one of many problems with living in a state of constant crisis. You cannot recognize and deal with actual crises.

With the realization that a change in medication is actually a pretty big shift and these side effects are really hindering my ability to do anything, I’m cutting back on extra stuff. Going into survival mode until I can get back in to my shrink and get a different med. That’s ok. It’s temporary. But I wouldn’t have done it if I hadn’t realized that bad medication is a minor crisis that needs to be dealt with.

So if you’re noticing that you’re falling behind and feeling overwhelmed with everything…it might not be the time to try to get rid of those emotions. It might be time to listen to those emotions and see if there’s something going on in your life that needs addressing. It’s far too easy for us to invalidate ourselves, since we spend so much time dealing with emotions that don’t make sense, but sometimes we do need to trust those emotions.

You got this friends. And so do I.

Now excuse me, I have more Pokemon to play.

Featured pic is me, self caring.

Using My Anxiety: A Neurodiversity Tale

I’m a pretty big sucker for neurodiversity. I love the idea that my differences don’t make me worse, and I especially like the mindset that I should be looking for the ways in which my brain makes my life better and easier for me so that I can rely on it in those ways.

But while some neurodiversities are more commonly talked about in terms of strength (autism and its tendency to allow for strong focus and pattern seeing is common), depression, anxiety, and eating disorders can be a little bit harder to reframe. Particularly when it comes to my eating disorder I have a hard time seeing how I can use the relevant traits to my benefit.

So today I’m going to try something that is mostly for my personal benefit, but hopefully will be a helpful roadmap for others who want to try to reframe how they see their own neurodiversities. I’m going to look at a concrete example of using my weird brain in a way that is positive.

I’ve been really anxious lately. My energy levels have been up thanks to some medication changes, and I’ve got some big changes coming down the pipeline at work. I’m taking on way more responsibility, and I’m feeling a lot of pressure to perform at a high level because my bosses have expressed that they’re happy with me and want me to grow. Of course in my mind that means I have to live up to high expectations, and so I want to push myself much harder. Any mistake begins to feel like the end of the world. I imagine I’ll be fired because of that typo I made.

But I have also been highly productive recently. I make myself a detailed to do list each morning, and rarely hit the evening without having finished nearly everything on it. I just produced my first professional brochure, which I’m quite proud of. I’ve been writing like crazy. Despite the fact that sometimes the anxiety gets in the way because I will focus on my fears instead of on what needs to be done, it also motivates me in a major way. I haven’t worked this hard in a long time.

And sometimes it gets me to a place of control and calm. I see what needs to be done and I do it, with no worry about whether I feel like it or whether it’s fun. It needs to be done and so I do it. More often than not, a tinge of anxiety is what pushes me to enjoy my work.

That might seem odd, but I don’t feel anxious about work that is meaningless to me. If I don’t care about the job or the consequences, then I don’t have any anxiety about getting it finished quickly and done well. So my anxiety is a good indicator to me that this is something important. That means I’ll double check things, do better work, and overall feel more accomplished than I do when I get something done that I don’t care about. People who don’t have strong anxiety might not have such an obvious an easy way to tell what they want to be doing and what’s important to them.

 

I felt this today. It had been ages since I had felt properly accomplished, truly in “flow” or whatever it is the kids are calling it these days. And while I don’t love how anxious I’ve been lately, it is the bump that tends to get me to a really content place. So thanks anxious brain for pushing me to work harder and feel motivated. You make me a motivated and quality worker who takes criticism seriously and is constantly working to improve myself.

 

Depersonalization vs Dissociation

Recently I’ve seen a good article on depersonalization disorder floating around. Like many people, I’d never heard much about depersonalization, despite the fact that I have experienced it for extended periods of time in my life. But when I read this description, I felt both a sense of overwhelming familiarity and also some serious confusion. Because what they were describing was something I had been told was called dissociation.

So just to clear things up, I have researched the differences between depersonalization and dissociation so that you don’t have to. Both of these are surprisingly common experiences that don’t get a lot of airtime and could use more attention. So let’s clarify terms and learn! Huzzah!

 

You can find this full post at Aut of Spoons.

Yes Trigger Warnings Do Help Me: Here’s How

I’ve talked before about trigger warnings, what they are, why they’re useful. It might seem like I’ve covered every element of the discussion possible. But there’s something odd that I’ve seen in discussions of triggers: no one is willing to say that they are the ones helped by trigger warnings.

I have many friends with a wide variety of mental illnesses, and many of them talk often and openly about their support for trigger warnings, but more often than not I see people say “I personally don’t find them helpful but I support them anyway.” Despite reading nearly every article about trigger warnings that comes across my radar, I can’t recall a single article that said “trigger warnings make my life easier.”

So I’d like to offer the perspective of someone who does find trigger warnings exceedingly helpful.

When I see a trigger warning, it’s very rare that I actually avoid the content it labels. I do not find TWs helpful as a way to curate my life into a happy little bubble that doesn’t include anything difficult or upsetting. First, that’s impossible and I spend much of my life dealing with things that are triggering anyway. Second, the point of the TW is ideally to allow people with mental illnesses to participate more fully in difficult discussions.

What IS helpful about TWs is that they let me know what’s coming. When someone talks about weight loss or self harm out of the blue it feels like I’m being smacked. Worse than that, because of the edges of paranoia that come with my depression and anxiety, it feels personal. It always, always, always feels like they’re talking about me or attacking me in some fashion, intentionally bringing up the things that make me feel the worst.

Now I realize that this isn’t rational and it’s something that I am working on fighting on my own terms, but the presence of the TW is enough to give me the space to realize that they want to have a discussion and also that they care about my well being. The TW is what lets me take a second to engage the more rational parts of my mind and lets me be gentle with myself.

In DBT there’s something called Wise Mind. It’s the balance between emotions and reason. When you’re in Wise Mind, you’re aware of your values and goals, and also capable of paying close attention to the facts at hand. TWs give me the space to try to be in Wise Mind. It’s that moment of mindfulness that makes me pull away from the strong emotional reactions I would have otherwise.

Sometimes when I see a trigger warning I choose to continue reading but I’m highly aware that if I need to close the window or go away for a while. that’s ok. It puts me in the mindset of self care rather than my typical mindset that sees disengaging as a failure.

Trigger warnings very rarely tell me that I should opt out of a conversation. Instead, they tell me that I’ll be safe if I try to engage. To some extent they’re a signaling mechanism that lets me know people care about my mental well being. But more than that they’re a reminder to me that I should be considering my mental health and engaging the skills that I have. And it gives me a heads up of what skills I’ll need to use based on what kinds of content will be there. If it’s weight related, I just skip all numbers. If it’s self harm related, I usually engage some kind of anxiety relief or self soothing (with a fidget or game).

When I don’t have the warning it hits suddenly and I don’t have coping skills at hand. It’s easy to get overwhelmed. It’s easy to let myself slip quickly into an anxiety attack, or even to use symptoms. TWs help me protect myself.

So when I see a TW, I feel safer. I know that I am safer because I take a minute to check in with myself and prepare for what might be coming. And I’ve found that I am almost never full on triggered by something that I’ve had warning for. It makes my life much easier and more than that it saves me from a lot of pain. Serious, real pain. That’s why trigger warnings are helpful to me.

Taking Anti Depressants Is Actually Really Hard

Last night I got drunk. Really, surprisingly drunk.

That in and of itself isn’t news, nor is it something much of anyone needs to know. It’s the why of it that’s important. You see I am not a heavy drinker and I don’t usually get drunk, definitely not on Wednesday nights. I just went out and had a couple ciders with a work contact. Normal.

Except that less than a week ago I doubled my dosage of my anti depressants. And so halfway through my second cider everything went swimmy and it was hard to focus on words and faces, and it was taking all my concentration just to nod at the right times in the conversation.It was completely unexpected, and entirely disorienting.

But more than that it meant I had to call my boyfriend for a ride home because I couldn’t drive, and cancel plans to see a family friend one last time before she flew home to Germany, and couldn’t do the last hour of work that I had intended to do that night. It interfered with my life to become suddenly, unexpectedly drunk.

Ok, so I’ll take full responsibility for the fact that I drank. I made that choice and I didn’t have to. But what’s difficult about meds that many people don’t always get unless they experience it is that your body will react to all kinds of things in unexpected ways. You can’t always predict how your body will react. There are side effects galore, and even if you find a med that works for you and whose side effects you can handle, it’s incredibly likely that after some amount of time you’ll need to adjust dose or type because brains adapt and change.

So that means that I will periodically not know what I can reasonably expect from my body most likely for the rest of my life. Sure, I can take precautions. But even as my medications make it possible for me to live my life with minimal intrusion from my mental illnesses, they leave me with different kinds of uncertainties. Will my sex drive dry up if I change meds? Will I start gaining weight? What happens if this one gives me side effects like Effexor, and leaves me shaky and weak for days if I miss a single pill?

One of the things that grates on my nerves in discussions of whether medications are the devil beast that’s ruining everyone or the godsend that’s curing all of mental illness is a serious lack of focus on the actual experiences of people who actually take psychiatric medications. Like most of life, it’s a mixed bag. It’s often confusing. And it often seems as if every time you find something that helps there’s some other effect hiding behind it. For me, meds have stabilized me enough that therapy works. But the downside is that they leave me even more out of touch with my body, and even less capable of predicting how basic things like sleep, food, and alcohol will affect me.

I would really love more discussions of what the actual experience of taking anti depressants is like. So here’s what it’s like for me: it’s incredibly helpful because it gives me some breathing room from overwhelming emotions. I don’t feel completely flooded on a regular basis when my meds are working. But it’s confusing and frustrating too. I’ve had meds with awful side effects, and even the meds with reasonable side effects are annoying. They make me sleepy and hungry, they mean I can only have a half a glass of wine before getting unreasonably buzzed, sometimes I can’t tell if my brain is fuzzy and hard to focus because of depression or because of the medication I take for my depression. It’s a confusing experience. You can never suss out exactly what things (good or bad) come from meds or just from life. But so far they’ve helped. And I’ll accept that.