This is not a think piece

So…
Yeah.

As many of you know, I’m pretty much always at work, trying to figure out just how to incorporate concepts of consent into the world.

I parent my kids through that lens.
I incorporate as much as I can into my teaching – a challenge, as my position of substitute teacher doesn’t lend itself well to the relationship-building required to make these conversations meaningful.
I just started a PhD a couple of months ago, with research interests in how the school is a site which perpetuates rape culture, and how consent-encouraging practices can be effectively used in classrooms.
I speak about consent at conferences when I can.
I curate a Facebook page, posting links to resources and offering lesson plan ideas (sometimes broad, sometimes extremely specific) that correspond with Ontario curriculum expectations.

I’m pretty well-known in some circles as someone who does this work, so I suppose I shouldn’t be too surprised when people turn to me for my opinion on this rape case, or that think piece on reporting.

Here’s the thing, though:

On top of all of those things I listed above, I’m a survivor of sexual violence myself. And while I willingly participate in all of the above, I make choices about how much of myself I can invest in any given moment. I can set up therapy and massage appointments to correspond with times when I know I’ll be focusing more than usual on rape culture. I can mediate the triggering harm this causes me (and it does cause me harm) by having some control over how it enters my consciousness at any given moment.

I understand why people have come to me, asking, “You must have SO MUCH to say about (insert name of person who doesn’t need me to continue naming him), and the denials, shaming women for not reporting, the lack of belief.”

I do have lots to say, and, when I feel okay about it (and sometimes when I need to get it out of me), I’ve shared this and that. But that’s again something within my control. Walking into meetings and being asked what I think, having this happen over and over throughout the last week-and-a-half both in person and online, has been exhausting. It’s made it much harder for me to stay on track with parenting, school, and work. It’s made it much harder to stay on top of my physical health, as my sleep is disrupted. My mood is… complicated.

This kinda sucks, and I’m not the only person experiencing this. Not everyone has the self-care resources I’ve developed to keep me well. There are so many women (and, yes, men too) who have been in a constant state of alert since the story broke. The internet can be a dangerous place at the best of times, but it’s also a social lifeline for many. We expose ourselves repeatedly, torn between not being able to resist reading as the train wreck gets bigger, and the social isolation that would arise from enforcing a self-ban.

I’m not going to tell you what to say or write. We all have to get this shit out of us somehow. What I am asking is that you consider the impact of how you seek information or opinion.

Post an article? Okay. I can choose to not read it.

Ask me a direct question and expect me to respond? Right now? That’s a lot. Too much, maybe. I’m going to (gently) suggest that you model consent when you talk to people.

“I would like to talk to you about X, because I’m curious about what you think. Is right now a good time, or can we talk about it at another time?” I would welcome this approach.

Please note: if you’re a survivor and you’re struggling and you just need to talk to someone else who might get it, that’s different. I’ll find the spoons for that.

If you just want to have a conversation, though? Proceed with caution and care.

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What happens when autistic young men meet up with pick-up artists? Pretty much what you’d expect.

I’m taking a big risk writing this post. I recognize that it may be misinterpreted as an agreement with concepts that go completely counter to my intention. It’s time, though. 

The media is currently abuzz with the planning and execution of Friday night’s murders at the University of California, Santa Barbara campus. He must have been mentally ill, people argue, to have written a 100+ page manifesto explaining his motivations. No one sane would have uploaded a YouTube video detailing his plans for retribution against the women of the world who refused to date or have sex with him. While most mainstream media outlets gloss over the inherent misogyny of his actions (and the clear connection between his choices and those of Marc Lepine in Montreal in 1989), the speculation of the role of mental health is high. Described as disturbed and unstable by people who claim to have known him well, the preferred focus appears to be on demands for greater gun control in the US as a way to prevent this from happening again. 

The other media focus has been (as with many mass murders committed by white men before Elliot Rodger) on his status as an autistic person. He had Asperger’s, folks say, so this is obviously why he hated women, killed his roommates, and planned to slaughter every woman he encountered. Because autism makes you disconnect, socially isolated, a dangerous loner. Because autism means you are incapable of empathy or of seeing other people as human beings. Because autistic people are volatile and unpredictable.

You do all realize that’s bullshit, right? 

Here, however, is where I may lose a few of you: while autism does not make someone more likely to be a misogynist, autistic men are definitely disporportionately more vulnerable to the messages of pick-up artists (PUA)  and men’s rights activists (MRA). The reasons for this are complicated, and deeply tied into our ableist, sex-negative culture. 

As a culture, we traditionally do as little as we can get away with when we discuss sexuality with children. We describe the mechanics of puberty in technical terms, we talk about how to prevent pregnancy and sexually transmitted infections in as abstract ways as we can, and we avoid avoid avoid as much as possible, with the assumption that kids grow up and figure most of this out as they go along, or that they don’t need the information because it won’t be relevant to them, or we hope, as parents, that the school will do the awkward work for us. I’m just talking about kids who are perceived as able-bodied in this description. Disability compounds the conversation. As parents of autistic kids, we’re told to lower our expectations. We’re indoctrinated with the idea that our children will grow up to be asexual misfits who are incapable of making intimate connections and partnerships. 

For young autistic men who are seen as “high-functioning” (as I’m going to assume Rodger was), the two scenarios combine: we assume that they’ll probably not be interested in dating and relationships, but if they are, they’re smart enough to figure it out when it’s time. 

It’s not about being “smart enough.” The common understanding of how autistic people learn is that direct instruction is integral to comprehension. A lot of us are not so good with abstract concepts and figurative language. We are often concrete thinkers who benefit from step-by-step explanations. Guess who’s really good at offering young men step-by-step explanations on how to get a girlfriend? 

Pick-up artists. They demystify a terrifying process. While social skills groups and parents go around the idea of dating and sexuality, PUAs jump right in and offer concrete steps on how to get exactly what you want. They give advice on appearance and approach, and offer praise for attempts at contact. They acknowledge that autistic young men are capable of and interested in being sexual with other people (in this instance, women) – validation few others in their lives are willing to consider. 

So, yeah. Autistic young men who are interested in women are definitely at risk of embracing MRA philosophy, and of emulating misogynist pick-up artist practice. There. I said it. It’s out there. Now, what do we do about it? Simple answer, more complicated execution. The short answer is that we ensure that every young person has access to comprehensive sexuality education that’s based in respect, mutual pleasure, and consent. We humanize sexuality, and include the emotional parts of it in our conversations with youth. We acknowledge that sexual interest lies on a spectrum. We reinforce the idea that no person on this planet is owed sex by another person, for any reason. 

For autistic youth*  in particular, we incorporate dating and sexuality into social skills curricula. We talk frankly about dating behaviour, about what’s acceptable and what isn’t. We study examples from popular culture and role play how to talk to women respectfully. We model concrete ways of interacting with romantic interests, and provide young people a tool box of strategies. We provide a space in which they can talk freely about their feelings of frustration and isolation, but also about their successes. We replace the PUA step-by-step approach to getting laid with our own step-by-step approach to building confidence in interacting with attractive-to-us people. 

Yes, the fact that Elliot Rodger was SEEN AS autistic matters. The fact that the only people he felt took him seriously also actively encourage men to hate women matters more. 

* Throughout this post, I’ve spoken exclusively about young autistic men who are sexually attracted to women. I have not talked about men attracted to men, nor have I talked at all about autistic women’s experience of sexuality. I am in no way ignoring that comprehensive sexuality education needs to include a concrete approach for young women, nor am I overlooking sexual orientation as a piece of this educational approach. For the context of this particular piece, however, men who want to have sex with women are my target audience, for what I think are obvious reasons. 

(edited to clarify that we don’t actually know if he was autistic, only that it’s been reported.)

Not in my backyard

Imagine you’re a home owner, living in a mixed-income suburb. You find out that a house down the street has recently been purchased for use as a group home for youth with complex issues. How do you react? Do you worry about the safety of your own children? Or maybe the value of your property? Do you welcome the youth to your community and try to help them feel at home in their new environment?

This isn’t a hypothetical situation. A few months ago, Griffin Centre, a Toronto-area mental health agency, purchased a house in Etobicoke to use as a group home. Four young people moved into the home, and there have a been a few incidents where Emergency Services have been contacted. Now, this doesn’t surprise me: teens with mental health issues who are currently unable to live with family are likely going to need some time to adjust to a new environment. Some of the youth in the house are apparently autistic, and all also have developmental disabilities. Autistic people generally aren’t known for navigating transitions easily, so it doesn’t seem unusual that police cars and ambulances would make regular appearances for the first while.

It’s too much, though, for the residents of the surrounding community. It’s not the kids that are a problem, it’s where they are. They should be on a farm – somewhere rural, maybe. “Mental people” don’t belong in residential communities, after all. How do we explain these unpredictable, imperfect people to our totally normal children? How do we keep our innocent babies safe from the knowledge that some people aren’t the same as they are?

“This is a community for people, not for that.”

Not for that.

That.

Not people.

That.

If it were just random nameless community members, it would be bad enough. But Toronto councillor Doug Ford had to weigh in as well.

“You can’t destroy a community like this. People have worked 30 years for their home … My heart goes out to kids with autism. But no one told me they’d be leaving the house. If it comes done to it, I’ll buy the house myself and resell it.”

No one told me they’d be leaving the house.

One more person, this one in a position of power, dehumanizing disabled youth.

Let me tell you something: it is entirely possible that if my kids were raised by different parents that one or both of them may have been in a situation where a residential home might have been needed for a while. Hell, I’ll be honest: I have no idea if they’ll make it to adulthood without needing a residential option of some sort – none of us know this.

And that’s kind of the point, really. Not one parent in that community has a guarantee that their delicate snowflakes won’t be the cause of several police car or EMS visits to their homes. Not one of them has a guarantee that their family members won’t end up in a group home or residential rehab or a correctional facility. Many of those community members will find out over the next decade that one or more of their own kids has autism, and will have to make some hard choices about the future.

Is anyone going to call a town meeting to force these families out of the community? I doubt it. These hardworking homeowners who have experienced hard times will be given a pass. Their neighbours will show compassion, show up with casseroles, whisper their own concerns about their family members. They will show empathy, and will see them as people.

Just as they should for all of their neighbours.

Your semi-annual reminder: autism isn’t the problem.

A friend just asked if I’d read what was happening on Gina Crosley-Corcoran’s The Feminist Breeder Facebook page. (as an aside, the question referred to The Dentist Breeder, which made me kind of scared, because, well, breeding dentists sounds terrifying.) I went to check it out, and I’m left with a lot of feelings. I too am feminist, and a breeder, and the autistic mom of autistic kids. So when self-identified feminist breeders say they wish they could wish away something like autism, I pay attention.

I get why so many parents of autistic kids wish their kids weren’t autistic. I’ve been there myself, more than once. I’ve supported parents who have gone as far to say that if they had it to do all over again, they’d rather not have had any child if an autistic child were their only option.* To be clear, that’s not what Crosley-Corcoran has said (though maybe she has said it somewhere, I haven’t come across it).

Yes. I have wished that my kids weren’t autistic. I’ve wished that I wasn’t autistic. When things are dark and hard and nothing feels good, I dream about the greener grass many tell me comes with neurotypicality. Is the autism what I need to hold up as the cause of my distress, though? Sure, sometimes. There are definitely parts of being autistic that I would consider impairments that need support. My executive functioning goes out the window when my stress levels get high, and it takes much more energy to stay on top of everything that needs doing. I’ve had some success with reducing that feeling of shut down by cutting gluten out of my diet. It’s a treatment strategy that works for some of us, and is completely useless for others. As a lovely side effect, the absence of gluten in my life has also reduced a lot of my chronic pain issues. I also see a psychotherapist on a regular basis, as well as a massage therapist. I don’t take medication for my anxiety and depression at this point, but I’m not against it, either.

Are my kids gluten-free? Nope. Are they dairy-free? Not even a little. Do they see any specialists related to their autism? Nope. Might they benefit? Sure, they might, but at 13 and almost 12, they do have a fair amount of sovereignty over their bodies. They have the right to be involved in decision-making over how they want to make things work better for them.

I should mention something about my kids. I was talking to them about the IEP process, as I think it’s important they know when I’m talking about them with the other adults in their lives. I explained that it’s a document that’s mostly for kids with a number of different disabilities, to ensure that their learning needs are met well in the classroom. My 13-year-old’s reaction was telling:

“Wait, what? I have a disability?”

He’s known since diagnosis (at 3.75) that he’s autistic. We started off with All Cats Have Asperger Syndrome, which I cannot recommend strongly enough. Seriously, if you have a child in your family who has recently been diagnosed, this is a great introduction to what it means (though I get frustrated at all the male pronouns, given that there are two people in our household who do not use them).

But I digress. Where was I? Oh. Yes. There are times I wish I weren’t autistic, or that they weren’t autistic. When I ask myself what it is I wish was different, though, it’s almost never the autism that’s the problem. It’s the world that’s the problem.

Did you see that?

It’s the world that’s the problem.

Do I want to change some fundamental parts of me, of them, to fit the world better? Or do I want to work to changing the world to fit us better? That’s the question we all have to ask ourselves, disabled and able-bodied alike. As a feminist who does her best to see the world through an intersectional lens, I can tell you that my understanding of where disability fits into my identity is inseparable from where woman, queer, mad, and white fit. I’m not sometimes only a disabled person any more than I’m ever only white. I am all of these things, and just as I wouldn’t de-queer myself (and I chose this one because it came up as being particularly contentious on Crosley-Corcoran’s page) because it’s easier to be heterosexual in the world, I will not choose to eliminate my identity as disabled person. It’s not my autism/queerness/madness/femaleness that creates disadvantage, after all. It’s others’ interpretations of what that all means. It’s not skin colour that creates disadvantage – it’s racism. It’s not autism – it’s ableism.

Do I have privilege because my kids and I are (most of the time) verbal, because we don’t have any intellectual impairments, because two out of three of us could easily pass (and I often do, and feel a lot of ambivalence about)? Yep, I sure do. I’m raising two kids entirely on my own, generally hold down at least two jobs at a time, have never bounced a cheque, and I have many complex and wonderful friendships. I’m the effing poster girl for what high functioning looks like, and lots of people have it harder. I will never tell anyone that their parenting load isn’t as heavy as they think it is, because who the hell am I to do something like that?

What I will say is that your kid is your kid, and please be careful that they don’t grow up internalizing the message, “We love everything about you except your autism.” If parents of autistic kids could say (and believe) “We love our autistic kid, and we’re working to help them love all of themselves,” that would be so great. And you know what? Loving your kid doesn’t mean not looking for ways to make some things easier. Fight for access. Help your kids develop good coping strategies. Love their quirks, and reassure them that we’re all a little different in our own ways. Help them learn to self-advocate to minimize the impact of their impairments on their school and work and independent lives.

Reassure them (and yourselves) that autism isn’t the problem.

*By “supported” I mean offered emotional support, not agreed with, in case that isn’t clear.

Evil. Insane. Mentally Ill. Autistic.

Every time I read or hear about another violent multi-victim crime, I hold my breath, and I wait. How is this crime going to be described? Who are the victims? How are they painted? Do we hold up the most seemingly innocent first, as a way to make the crime seem that much more obscene in the eyes of those watching from afar?

And the perpetrator – what do we hear about him (because, for whatever reason, they are almost always men)?

Evil. Insane. Mentally ill. Autistic.

This. This is what I wait to hear every time. And almost every time, I hear some variation of the above. We are still, as a culture, feeding the stereotype of mentally ill people as being possessed (“evil”). It can’t possibly be a medical condition, or a result of decades of abuse, or something that can be socio-scientifically understood. It is a character flaw, and something that comes from not being strong enough to withstand the temptation of the devil. And people with mental illness are uncontrollably violent and dangerous.

And then there are the autistic people. They’re so unpredictable. They show no empathy, so you just know that they’re capable of something like a mass murder. They wouldn’t feel anything after such an event. They’re volatile, and heartless, and already pretty much psychopaths. Is it any wonder when they’re accused of horrible events?

I live with mental illness.

I am autistic.

One of my children lives with mental illness.

Both of them are autistic.

None of the three of us is going to suddenly snap and kill everyone in our wake. In fact, all three of us are at much higher risk of experiencing violence as victims than we are of committing acts of violence ourselves. Media and cultural focus on mental illness and/or autism as a significant risk factor for violent acts puts the three of us at even higher risk of experiencing violence at the hands of those trying to protect the rest of the world from us.

I have seen some in the autistic community speak out, separating autism from mental illness in relation to yesterday’s tragedy. This is a shortsighted move, and a dangerous one. Claiming that the shooter (whose name I will not share) was mentally ill and that autism had nothing to do with his actions indicates agreement with the idea that mental illness was the cause. Given that over 2/3 of autistic individuals will also experience a significant mental illness over the course of a lifetime, this lack of solidarity does none of us any favours.

How do we shift the discourse? I had a conversation with my 12-year-old last night about the incident. Here is his (autistic) feedback:

His first question upon hearing about the incident: “Where did he get the gun?”

Pretty practical question, no? Doesn’t delve into motivation, mental health, or what he may have eaten for breakfast. Killings were accomplished with a gun, so let’s trace the origin of the weapon. Sounds like a logical starting point.

I explained that the culture of guns in the United States is very different than that in Canada, mostly because of the Second Amendment.

His response? “Think about it this way. If the Second Amendment were never made then people would not need guns for self defence because nobody would have guns in the first place.”

Uh, yeah. The US has created its own internal arms race with the Second Amendment as its justification. Pretty astute observation.

When I told him that it was reported that the shooter was autistic, he got a confused look on his face: “Who says his doing it had anything to do with autism?”

He could not fathom how anyone would connect autism to mass murder. It just didn’t compute.

He ended the conversation with,”Walmart sells semi automatic guns?”

I am not arguing that some people aren’t more likely to commit acts of violence. I’m not even saying that it’s impossible that psychotic or schizophrenic people can’t be compelled to do these acts. I know it’s possible. I also know that the compelling voices aren’t an across-the-board symptom of either of those conditions. I know that one can only be compelled by one’s brain to do something if one has access to the tools to carry it out. I know that one’s risk factors increase if one does not have access to affordable and appropriate mental health services.

You want to put an end to this kind of violent crime? Don’t lay it at the feet of “the insane” or “the autistic.” Question your cultural values: is having ready access to guns made specifically to kill multiple people in a short period of time a legitimate interpretation of the Second Amendment? Is the “Gd-given right” to protect yourself from tyranny worth the lives of the people who were murdered yesterday? Is the philosophy of pulling oneself up by one’s bootstraps more important than a country prioritizing funding for excellent accessible mental health services (and don’t think Canada is doing much better with mental health – especially for children)?

The cultural/media slant of yesterday’s incident has put my entire family and so many others at increased risk of stigma and physical violence. Change the conversation. Make all of us safer.

Adjusting to the new normal

It’s been almost three weeks since it was confirmed that I am autistic/have Asperger’s/however I’m going to end up self-identifying. The labeling is still a work in progress. I keep forgetting, and I find myself talking about autism in the third-person outsider way I’ve always done before this. It doesn’t feel natural to say “we” instead of “they” yet, and maybe it never will. Maybe it doesn’t need to.

I’ve told a few people about my not so surprising news here and there. Um, well, I guess I’ve told anyone who regularly reads my blog. But in person, I mean. A few. To mixed results. It’s tiring to have to explain my “sudden” disability. That it is invisible makes it even harder. I’m trying to keep a positive outlook on these interactions, and am working on using them as opportunities for me to get more comfortable with my own understanding of disability as well as highlighting the teachable moments for others around their expectations of what autism can look like, sound like, be like. The hardest part of this is feeling like I’m in a position where I have to justify this label, and explain how it fits. It was suggested to me that I get a second opinion. After having had more than a dozen medical and psychiatric opinions over the last thirty years, can’t I just feel relieved that something finally fits?

I have thought I was crazy my entire life. And maybe I still am crazy. I’ll likely always have a good chunk of anxiety, and I don’t expect my depression to disappear overnight (if at all). Sixty-five percent of folks on the autism spectrum will experience issues like anxiety and depression, so that seems pretty par for the course. But what of the rest of it? I was diagnosed with a dissociative disorder, once upon a time. When I’m profoundly overwhelmed, it’s common for me to go nonverbal and shut down entirely for a bit to regroup. With this new understanding of autism in me, that behaviour takes on an entirely different, non-pathologized context. Shutting down IS coping. It’s not disordered behaviour. It’s not irrational in the face of so much interference in my brain and my inability to process everything simultaneously. It buys me quiet, and time, so that I can search for patterns, for meaning. So I can figure out the important, most pressing pieces, and focus on them when I get everything in the right place in my head again.

It has also been speculated by psychiatric professionals that I may have Borderline Personality Disorder. To qualify for diagnosis, individuals must exhibit 5 of the following characteristics:

1) Frantic efforts to avoid real or imagined abandonment.
2) A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation.
3) Identity disturbance: markedly and persistently unstable self-image or sense of self.
4) Impulsivity in at least two areas that are potentially self-damaging (e.g., promiscuous sex, excessive spending, eating disorders, binge eating, substance abuse, reckless driving).
5) Recurrent suicidal behavior, gestures, threats or self-injuring behavior such as cutting, interfering with the healing of scars or picking at oneself (excoriation) .
6) Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability or anxiety usually lasting a few hours and only rarely more than a few days).
7) Chronic feelings of emptiness
8) Inappropriate anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights).
9) Transient, stress-related paranoid ideation, delusions or severe dissociative symptoms

(Bolded items are what I have experienced.)

If I have difficulty communicating on an emotional level, it stands to reason that my interpersonal relationships are often going to look like a giant clusterfuck. Within friendships and intimate relationships, I have always struggled with feelings of isolation and confusion. I also regularly experience fear of looking stupid if I express that I have no idea what someone’s words or behaviours mean.

I have tried to connect with people on a number of levels. While I hate that having multiple sexual partners is pathologized within BPD’s definition, I will admit that my own choices around unemotional sexual connections have been motivated by my need to connect at some level with someone. I know the rules around sex, most of the time, and if there isn’t an emotional component, I’m less likely to look like a freak. (in theory.)

And the cutting? Well. Self-injurious behaviour is pretty common in folks who have communication difficulties. Add in the sensory dysregulation I regularly feel, and you get someone whose skin literally feels like it’s too tight, but can’t explain what that means. Cutting can be regulating, and can explain frustration and pain that I can’t always put into words.

I’ve already addressed the dissociation, and the emptiness? Well, that crosses over into depression territory.

This is making me wonder, as I type this all out: is there a connection to the disproportionate number of women who have been labeled with BPD, and the under-representation of women on the autism spectrum? It’s sadly commonplace for people of a certain age to have been traumatized and mis/labeled by the psychiatric system on the way to finding autism. It’s so easy to believe that the experts know what they’re talking about when they tell you that they know exactly what makes you crazy, but it’s a lot harder for them to step back and see the crazy as part of the bigger picture. I am a very big picture in a pretty small body, and what I call that picture is currently in flux. Maybe it will stay that way. I don’t know. What I do know is that for the first time in my whole life, I’m starting to not feel broken. I’m starting to accept that I’m complicated, that I don’t fit, and that there is no shame in that. I am not crazy for having to tune out when too much is happening, and I’m not stupid for not understanding when people speak to me in ways that are unclear.

All that being said, my own communication impairments will not always be the reason for misunderstandings. My autism (and therefore I) will not be held solely responsible for when shit goes south. I am working hard to be open about my impairments and what helps me function better, and I’m trying my best to listen for meaning and not get trapped in the white noise that often accompanies messages. I can’t accomplish that by myself, though, and I will not let my disability act as a scapegoat for every problem ever.

It’s not a tumour: a post about autism

Mine, that is.

Yeah. Mine.

Once upon a time, way back in the early days of my parenting journey, I found out that my oldest child was autistic. As is my way, I read everything I could get my hands on, and did a little self-diagnosing here and there. “Oh, precocious reader. Huh. early talker. Difficulty with unstructured social settings. Hmm. Guess he’ll take after his mom!” It was a bit of a running joke among my friends when my autism was showing, and it was something I saw a lot of when I worked in the field.

“Is that kid’s dad on the spectrum?”
“Yep.”
“Does he know?”
“Oh, hell, no!”

Quite simply put, after my son was diagnosed with autism, I started seeing that shit everywhere. But not really. Not in a way that I actually believed was true, for me.

And then my daughter was diagnosed with it. And the odds, ever in my favour, seemed to indicate that maybe it wasn’t such a wacky idea that my wacky little world had more autism in it than could be coincidental. Like rules? I sure do! Have difficulty completing tasks? Oh, hells yes. Get easy emotionally overwhelmed? Don’t talk to me.

So much of my quirky nature, however, could be easily explained away by other things. I knew I was crazy (of the depressed and anxious variety), so I chalked up much of my poor social skills stuff to social anxiety, and inability to talk about my feelings as part of my depression. It wasn’t a perfect fit, but it made enough sense.

Until it didn’t. What if, I started thinking to myself, the depression and anxiety didn’t come first, like I thought? What if the weirdness, the avoiding family events by diving into a book, what if my pathological childhood hatred of having my photo taken — what if those things meant more? What if my lifelong sensory stuff had an origin? What if my struggle and consistent failure to stay organized wasn’t actually because I was lazy or unmotivated? What if my ability to remember the most minute little bits of information while not being able to find my housekeys had an explanation?

I decided I needed to know, one way or the other. I found a psychologist with a specialist practice in Asperger Syndrome in adults, and made an appointment for an assessment. Which was today.

Sure enough.

Oh, I “present well,” and I did “remarkably well” on the executive functioning tests she did, but she also stated that I clearly demonstrated a significant number of markers for Asperger’s.

So there you go. How am I feeling? I’m not sure. This really isn’t a surprise. I mean, I’ve had my suspicions for years, so confirmation of said suspicions should be validating, right? It is, to an extent. I’m relieved that I now have an explanation of why I have found and continue to find so many things so much harder than most of the people around me. I’m not broken or failing. I’m just not wired to excel at some stuff (which could be said about most of us, to an extent).

In some ways, this is going to make my life make a lot more sense. In spite of doing really well academically, I still struggle at times with understanding assignment expectations when they’re vague or I don’t have a model. I get lost in the minutiae, and it sometimes takes me longer to take all the teeny bits of fascinating information and develop a big-picture piece out of it all. I’m now in a position where I can say, “I need more time,” and not feel like I’m failing at the assignment as a result. I can ask for more concrete explanations without feeling stupid for not understanding the assignment as is. I can pinpoint the reason why something isn’t working, and talk about what I need to make it work better for me. Those are all incredibly valuable things. If nothing else, I’ve had a lot of years of autism-based disability advocacy experience that I can now apply to myself.

And here I am, feeling vulnerable, and overwhelmed, and … grief. I’m feeling grief. I spent my entire life believing I was a failure for not understanding subtle social interactions. I have always thought there was something seriously wrong and unlovable about me, because I’ve had so much difficulty maintaining relationships and even close friendships. When I struggled with independence as a young adult, again, those feelings of failure were strong. How different might my life had been if I’d known earlier that autism was probably making all of those things more challenging for me? I don’t know. Maybe it wouldn’t have made any difference at all. But I think I need to mourn the loss of what never was for a bit. The little girl I might have been had I known that my difference had a name needs a fair good bye before I can celebrate the pretty kick-ass Aspie adult I grew into.

Gloria Gaynor is not enough for me (warning for possible SA triggers)

I’m so fucking tired of simply surviving my life.

The latest step in the years-long quest to find the answer to what makes me sick will be an endoscopy and colonoscopy this week. Because I have a family history of many auto-immune issues (including but not limited to Crohn’s Disease), that’s what we’re looking for. The GI doc requested that while we’re at it, I should reintroduce gluten into my body to see if he can find some damage due to celiac while he’s in there.

I have been trying to focus on feeling as well as I can through this prep process. I have been unbearably sick at times over the last three weeks, wondering every day if it will be worth it to have inflicted this torture on myself. You’d think that would be the most upsetting part of this process, but I’ve noticed in the last few days that how I’m feeling physically is nothing compared to the absolute terror I’m feeling right now.

Imagining the process of having tubes inserted into parts of my body has triggered a trauma response I would not have expected. I am feeling extremely triggered. I am feeling like every non-consensual act of sexual violence I’ve experienced is right on the surface again, pushing at my skin, stretching me too tight. I can’t breathe sometimes, it hurts so much.

This is different, I keep telling myself. This is a medical procedure to which I’ve consented. I am in control of this: I can choose to not even show up, if that’s what’s necessary. But can I? Really? I’m not in control over what’s been happening to my body for the last Gd only knows how many years. My body has betrayed me, and has coerced me into needing invasive and violating procedures to determine just what the hell is wrong with it. My body, the battleground for my trauma and my illness – it’s calling the shots.

When I had my tubal surgery last year, I didn’t have one moment of apprehension. I was completely in control of the situation, and it was, although emotionally complicated, an entirely positive experience from start to finish. So what makes this time so different? Is it because it’s connected to my mystery disease that has robbed me of so much? Is it because I’m still dealing with relatively fresh memories of invasion, violation, and betrayal, and it’s all mixing together to make a giant trauma mess?

I don’t know. There are only two things I know for sure:

1) I am TERRIFIED of what’s to come on Thursday.
2) I don’t want to be.

This is the shit I have taught others about living through sexual violence but have chosen (unwisely) to think I could avoid. You never know what’s going to trigger you, when, or for how long.

And it fucking sucks.

When the horse throws you, get back on.

I am on my ass today. It’s okay. Even though I’m exhausted and falling over from the tired, my mind is clear for the first time in almost a week. It’s been pretty crazypants in my body this week: my heart playing rapid percussion on my ribs, my stomach in knot after knot, my thoughts erratic and unfocused, the black dog holding me down, trying to drown me. I’ve had moments where my ability to cope was not strong enough to fight this battle, and I’ve done a lot of compartmentalizing to make sure that my dysfunction didn’t rub off in places where not-crazy was needed.

Sure, non-crazy is needed all the time. But I don’t have it in me to perform not-crazy all the time. Short bursts of faking it ’till I might eventually make it, followed by nights of fear and anxiety and self-hatred and shame.

So, yeah. That’s been my week, and I’m glad to be on the other side of it. But it’s left me with the clear understanding that even though it eventually always ebbs away, the darkness also always comes back. And lately, I don’t bounce back so well. I was reminded last night that when things are dark, I use up all my spoons on my work and school and kid responsibilities, and have nothing left for loved ones, friends, or myself. That’s not acceptable to me. I need more spoons. In their absence, I need to find ways to use the ones I have more effectively.

I’ve been trying to find ways to be healthy, people who can help me build my mental health back up again. I’ve talked with my family doctor, who sent me to a psychiatrist. Bad fit. Baaaaaad fit. He was incredibly offensive, and is not someone I would feel safe working with for a second session, let alone for an extended period. He also prescribed medication with no follow-up, a general suggestion that I find a support group for PTSD, and that was that. He also commented on how successful and functional I’m doing, and how I really wasn’t that unwell.

Turned off by the experience, I committed to keep on keeping on on my own. That worked, until it didn’t. So I went to a trauma counsellor for a session. She thought I was coping just fine with my trauma stuff, but referred me on to a(nother) psychiatrist to rule out the biomedical crazy stuff. This one also said I was doing really well, though had too much stress and not enough support, and recommended cognitive behavioural therapy. Done by someone else (who will either charge me money I cannot afford, or take months to make it off a waiting list). I have access to eight sessions through my university’s counselling centre, which she sadly admitted was nothing.

Oh, and my family doctor suddenly disappeared 2 weeks ago, and has not yet resurfaced.

So, here I am. Lucid, today. Knowing that the black dog will return soon enough. I just called the outpatient mental health intake at a local hospital. I’ll find someone who can help me with this. I’m too stubborn not to.

New Year’s resolve: fighting back the darkness

(This post is dedicated to and inspired by the bravery of The Bloggess, who reached out to over 200 000 Twitter followers and countless other Facebook followers and blog readers today with her devastatingly honest narrative of her own struggles with depression. Jenny, thank you thank you thank you.)

I’ve been pretty much surrounded by batshit crazy for the last few months. Oh, let me be honest: things are often batshit crazy in my world. That’s part of what living with mental illness is. My flavour of crazy is, as far as I’ve been told, moderate to severe depression and anxiety. I’ve been like this forever, and now I’m raising a child who looks about as crazy as I am. I’m going to choose to see that as a blessing, in spite of how unfuckingbelievably hard it is sometimes: it could be so much harder for my kid if I didn’t have such intimate knowledge of what crazy can look like.

Recently, after my child’s most recent crisis (it’s password-protected, so if you really want to read it, let me know), the adults in this kid’s life decided to own up to our crazy. We stand with you, child, in our shared crazy. I never want this kid to think that a mental health crisis is a shameful secretive thing. I want them to grow into a strong crazy adult who knows when to ask for help, and isn’t afraid to do so.

That’s a shitload of work, though, y’all. And I’m tired. So tired. I’m in the middle of a loooooong depressive episode. Not my worst, but not fabulous. Wait lists abound for help with this, and a whole lot of people in my life are also, well, crazy. Empathetic as hell, but tunneling out of their own dark holes. So, what am I going to do to fight my way back to the surface? ‘Cause I am, you know. Fighting. All the damned time.

Here’s my plan: listen to the Bloggess. It’s a simple plan, really. I need to do more things that make me furiously happy. I’m not so much for climbing inside wolf pelts, tauntaun-style, or buying giant metal chickens, but I need to do more to revel in my innate ridiculousness. I need to remember that woman who ran away to join the circus. I need to stand in front of friends and strangers and test my spelling skills, and leave the stage more naked than when I started. I need to splash in puddles, start bizarre and inappropriate conversations with my children on public transit, knit while walking. I need to remember that all of those things and more come from me, and make me happy. And then I need to make them happen.

2011 was stupidly hard, and I forgot myself too many times. 2012? Is the year of being furiously happy as often as I can be. It may sometimes be an effort in faking it until I make it, but I will make it. And I’m taking that crazy kid of mine along for the ride.

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