The pressure to have the perfect baby: are we all a bunch of amateur eugenicists, or are we just into mother-blaming?

I consider myself pretty lucky. I have two amazing kids who have so far managed to reach adolescence without being eaten. They’re total weirdos, and do many things in ways most people around them don’t. And that’s okay. I know, though, that there are many people in the world, and maybe even in my life, who would not want my kids, because they’re not perfect.

When my oldest was first going through the diagnostic process to determine whether he was autistic, I had many … well-meaning (?) people send me links to studies on what might have caused it. Did I drink during my pregnancy? Too much access to ultrasound? Epidural? Did I eat something “wrong” when I was pregnant? Did I take medication? What did I do to make my kid less perfect than he should be? The questioning picked up again when my second child was diagnosed. I MUST HAVE done something.

The answer is, I did nothing but exist. My kids are likely autistic because I am. I have an explanation, and it’s one that works for us, but not everyone does. Parents who have children with Down Syndrome are told they waited too long, that they are at fault for their babies’ imperfection. Many are pressured to terminate pregnancies when their viable fetuses don’t fit what we’ve decided is the ideal.* Most pregnant people are policed about everything they do, and blamed when their babies don’t come out as expected. Eat lots of fish? Well, the mercury will make your kid stupid. An occasional glass of wine? Yep, your kid’s going to be a criminal with no sense of remorse.

And Gd help you if you don’t breastfeed, because WE ALL KNOW that babies fed artificial baby milk have lower IQs.

So, here’s my question: why do we care so much about the cult of the high IQ? Is being a genius a guarantee that our kids will grow up into “successful” adults? Do conventionally smart people have an easier time in the world? Probably. But not because they’re smart. It’s because the world is set up to privilege certain kinds of strengths over others. Able-bodied people are privileged over those considered disabled. They’re valued more, even as infants.

In our world, where “stupid” is still an acceptable insult, we daily reinforce that being smart is better. And if smart is better, and we have the power to prevent not-smart people from being, then it stands to reason that those who create new people would be pressured to follow very narrow behavioural rules in order to ensure they have the smartest kids possible. We have invested so much time, energy, and funding into policing pregnancy that we “don’t have the resources” to create and maintain space for those who don’t fit our norm.

I’d love to see a moratorium on campaigns designed to scare pregnant people into compliance. I’d love to see people use the words “stupid,” “idiot,” and “moron” less and less. I’d love to see more people embrace the strengths of the “imperfect” people in their lives. I’d love people to stop glorifying IQ, making it seem so much more important than it actually is.

* Because this needs to be said: for whatever reason you choose – of your own non-coerced will – to terminate a pregnancy, I will support you 100%.

Dress codes, redux

It’s that time of year! It’s finally starting to get warm enough to put the winter coats away for good, and the summer clothes are starting to make their way into our weekly rotation. After a long cold stretch, it’s such a relief to be able to feel the sun and breeze on our skins in the time we have outside every day.

It’s also a contentious time of year: though we know it happens throughout the year with yoga pants and leggings scandals, school dress codes hit their biggest enforcement times as the warmer layers are peeled away, even at the primary level. It seems like every day over the last week or so, someone in my Facebook feed has posted an article or blog post involving one more tween/teenaged girl who has been taken aside for dress code violations. Arguments go back and forth:

Schools are places of business, where students are supposed to be learning how to dress appropriately.

Schools are places where teenaged girls should feel safe to try on different identities without fear of being targeted for harassment.

It’s too hard for boys to concentrate when girls are dressed in ways that draw attention to their bodies.

Dress codes are enforced haphazardly, primarily target girls and young women, and those students who are more physically developed are targeted more often than those who are not.

Students should be learning how to follow the rules, and parents agreed to send their kids there knowing the rules. Flaunting a disregard for the rules of the space shows a lack of respect for authority.

Dress codes that are gendered are a symptom and a reinforcer of rape culture.

This is just a handful of the arguments I’ve heard from both sides of the fence. As with most arguments, everyone believes they are correct about their own perspective. I understand all of these sides. I’m sure it can be distracting if a young woman is wearing a tank top and shorts in class. I also think that everything on the planet acts as a distraction for many teenagers (girls as well as boys), and I am far more interested in supporting students as they learn how to self-moderate and control their responses to the world around them than I am in shielding them from having to ever figure this out.

I also recognize how some would see value in having universal rules from K-12: if 5-year-olds are expected to wear longer shorts and belly-covering tanks with thick straps, it won’t be so hard to convince them to do so when they’re 12 and it “matters” (and it only matters when our bodies hit that point where adult sexualization comes into play). We’re teaching modesty, in theory, from a very early age, so that adolescents will embrace this as a value when they start to make their own decisions about how they want to be seen in the world.

I hear the argument. I get it. I don’t agree with it, though. I think that when little girls are told from early childhood that they have to cover their bodies, they internalize the message that something about their bodies needs to be hidden. Whether this is for social conventions of modesty or personal safety or any other reason, shame becomes associated with appearance very early.

I’ve written previously about my experiences of sexual objectification in high school, and how much shame I felt about my changing body both before and after it received unwanted attention. This experience has informed my current thinking on dress codes. I don’t entirely believe that it’s the distraction of the young men we’re focused on. I do think that top-down enforced dress codes include an element of adults sexualizing children and youth, and may lead to a feeling of tacit permission by adults for young men to provide unwanted attention to the young women in their classes – regardless of appearance.

I’m actually not against dress codes. I think, however, that we do everyone a disservice when we don’t include all the stakeholders in the decision-making process. A major focus in the Ontario curriculum, at all grade levels, is critical thinking. We expect students to learn how to think critically across all subjects. Does it not make sense, then, to have them apply these skills in practical, hands-on ways? Have a conversation with students:

Why do we have dress codes? What’s the function of a dress code in our school?

What helps you learn? What gets in the way of your learning?

What are the safety issues that go into certain clothing choices? How do we define “safety?”

You want to create a dress code you don’t have to enforce? Get the people most affected by it to be your primary stakeholders.

Happy World Autism Day

Yep, happy. 

April is Autism Awareness Month, and there’s nothing wrong with being aware of something. The question is how, though, are we celebrating autistic April: the way we would Women’s History or Black History Month? Or are we mourning the loss of the children we thought we had before diagnosis, wishing things could be different? A little of both, maybe? Maybe. 

Do we talk about the accomplishments of famous and everyday autistic people in April? Do we list the strategies autistic people have used successfully so that parents of younger autistic children can learn from real experts what works for us? Or do we highlight scientific or pseudoscientific interventions that have been experienced as traumatic or dehumanizing by those who were once autistic children? 

Do we seek out success stories – and not the big names, but the small-scale, people in your neighbourhood successes, or do we look only at the tragic family breakdowns that we blame so often on autism? 

Here. I’ll start with an everyday success. Hi. I’m 40. I was diagnosed at 38 with Asperger’s Syndrome. It took a long time for me to know for sure in part because of my age, in part my gender. Believe me, though. It fits. So, here I am. I’m an extreme introvert, but that hasn’t stopped me from being successful in caring professions. I’m also really good at retail, for what it’s worth. Right now, I’m a teacher, and I think I’m pretty good at it. I’ve managed to have had effective enough social skills to make two humans. I have a few close friends, several casual friends, and a strong complex romantic relationship. I’m raising two children by myself. I pay the rent. I sometimes have three or four jobs at a time, and generally manage to stay on top of things. I’m starting a PhD program in the fall. 

That all sounds pretty successful for anyone, really. I have a good life, as an autistic adult. My friends and partner are understanding, and when something doesn’t make sense, they ask. 

Do my words sometimes stop coming when I’m stressed or overwhelmed? Yep. Do I say the wrong thing and make people really angry with me? It happens. Do my special interests sometimes take over my life? Um, see the above PhD reference. Do my sensory impairments make things harder? They make things hard, yes. But I figure it out, and I keep going. 

Parents of autistic kids, please listen to autistic adults. A lot of us are also parents of autistic kids, and we have a lot to offer you in terms of support and understanding. We can also be remarkably practical. And we want to celebrate the kid(s) you have, with you.  

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.

Thoughts as I wait for the light to change at Yonge and Wellesley

Every day, I wear my sexuality as a weapon
In your face to keep me safe
Tits out
Short skirts
Femme ’cause it’s me and also fuck you
Overflowing with ferocity
Expecting your looks
Defying your expectations of
Proper

I will not hide
It makes no difference
If anything
I get catcalled less when I’m
In your face

I’ve had your eyes on me for thirty years
I’ve felt shame
Fear
Rage
And now, resistance

But now I’m back to rage
Because you aren’t only looking at me

Your new target
My fierce
Shameless
Confident
Imperfectly perfect
Barely pubescent
Child

I don’t know if she heard you
This morning on her bike
At the stop light
When you said

Oh that’s a cute one
But wait I think she’s still a bit young

You don’t get to break this one
To create shame where there’s none
To instil fear
You don’t get to have this one

Not only will I not let you have her
She won’t let you either.

“You’re obviously high-functioning autistic, though, right?”

I never know how to answer that question. Mostly because it’s a bullshit question. Today, I am not functioning very highly at all. I got up, woke up the kids, showered, and walked them to school. I spoke the entire way there, reassuring an anxious child that school would be okay today, and that they could do it. I left the school, and haven’t said a word since. 

This weekend, I was in a situation where I had to disclose my autism during a training session that had gone right off the rails for me. I was unable to attend to anything by that point because of my sensory defensiveness, and was struggling with a migraine, to boot. When I was required to figure out where to stand based on which metaphor resonated most with me as a response to a question, I was done. I sat down, disengaged, and waited for the activity to end. When the trainer asked for feedback, I explained that I was unable to participate in the activity because thinking in metaphors is a challenge on a good day and impossible on the day in question. 

And so she stated that I must be high-functioning. Because how else could I be in a teacher certification program? How else could I have been actively participating up to this point? How else could I not be rocking in a corner, banging my head against a wall? (believe me – that’s pretty close to what I wanted to be doing by then, but, well, time and place, right?) 

a) It’s none of your fucking business where my levels of “function” vs. “dysfunction” lie, unless it is directly relevant to you and unless I am comfortable sharing that information; 

b) I don’t think we have the same definition of “function.” My being able to play the neurotypical game doesn’t mean it doesn’t cost me more than I can afford at times. Yes, I am capable of accomplishing tasks in the way that the NT world requires. Can I do it at a sustained level without break? Not so well. 

Today, I’m at home, in bed. The last four days, I dealt with mind-killing pain. I walked for an hour and a half this morning, and can barely type this post now. “Too much” is relative, but wow, have I gone long past its definition for me. 

The kids’ll be home in 2 hours, and the one task I said I would do, I haven’t. I will do my best to turn on again for them when they come home, because while they get the need for quiet disengagement, they also need me to be present in ways that can feel like too much on days like today. 

Pushing through really hard stuff doesn’t make me more functional than those who avoid or melt down. I *want* to avoid. I *want* to melt down. It takes an astonishing amount of energy to force myself to stay “appropriately” engaged. Inevitably, I pay for it. In, as it goes, sweat. 

So, no. I am not high-functioning. I function. And then I don’t. Repeat repeat repeat. 

The Impact of Ignoring “No”: A Response to “Autism Ethics: Permission to Say No.”

Brenda at Mama Be Good wrote a piece yesterday on giving children with autism the permission to say no in a therapeutic context. She touched on how many therapies for autistic kids focus on compliance to achieve tasks, and that “no” is heard not as a boundary word, but as resistance we must break through to achieve success. 

This, of course, as Brenda agrees (more politely) is bullshit. I don’t need to go over what she’s written, because you should just go read her words, but I am going to make the connection to autistic people and sexuality. Because “no” is a really important word for all of us when it comes to negotiating safe sexual boundaries. We all have the right to decide our own limits when it comes to sexual expression, and we have the right to have those limits heard and respected. Some of us know we have those rights.

Disabled people often don’t. Rather than have opportunities to develop the confidence to assert ourselves, many of us have had medical and therapeutic treatments performed on us not only without our consent, but without even any explanation. Rather than a care provider explaining what the procedure is for, and offering options on how to accomplish it, we’re given no room to develop negotiation skills. Is it any wonder why many of us struggle with recognizing our right to maintain boundaries in other contexts? 

All of us are safer, healthier, happier people when we have the ability to enthusiastically agree to our participation in pretty much everything in our lives. All of us are safer, healthier, happier people when we have space to negotiate for workable compromises when those yes moments are more complicated. All of us are safer, healthier, happier people when we can refuse to engage in an activity and have that refusal respected. 

All of us deserve to be safe, healthy, and happy. Reinforcing the idea in childhood that disabled people don’t have a choice in how we communicate, that we don’t have the ability to negotiate a middle point, that we can’t ever just say no and have it be heard and acknowledged and respected as a hard boundary, leaves us vulnerable both as children and through adulthood. 

When we value compliance over negotiation, we value less those whose compliance we seek. 

Fake it ’till you make it

If you pretend that you’re okay with something for long enough, eventually, you’ll be okay with it.

That’s kind of a problematic statement, though. It’s more or less the same thing as 

Be someone else until you become that person

Isn’t it?

There are times when I force myself to fake it ’till I make it. In order for me to have gotten to this point in my life, my key coping strategy has been performance. I assess a given situation, figure out the expectations, develop a persona that can best meet those expectations, and move forward wearing that costume. I’m starting to realize, in retrospect, that these personas start to disintegrate over time, and eventually I’m unable to hold it all together. So much energy goes into maintaining my situation-specific identity that I can no longer also accomplish required tasks as effectively, or in the case of friendships and relationships, be emotionally available. 

I am extremely successful at meeting expectations.

Until I’m not. 

In spite of my apparent successes, after falling apart so many times, I think it’s time to redefine success for myself. For all my talk about not wanting to intentionally pass as typical,

By performing normal,

Is that not exactly what I’m doing? 

Every time I take on the task of being someone else until I can comfortably be that person, I tell myself that the person I am isn’t worth as much as the person I’m pretending to be. 

The true irony of this for me is that I absolutely cannot abide when people lie to me. 

And yet. 

That seems to be all I do, at times. 

To everyone. To myself. 

If I give myself permission to show myself,

Awkward,

Run-on chatter word association,

Flappy hands,

AND I kick ass at the work I do and the love I give, 

Maybe, 

Just maybe, 

The only person I’ll ever need to be again is the one I already am. 

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.

Wishing and hoping (an #autismpositivity2012 post)

It appears that my recent diagnosis of Asperger’s was ideally timed. Today, an autism positivity flashblog is taking place, and I’ve had all week to figure out how to come at this in my own way.

If there’s one thing I know a lot about it’s autism (I know a whole lot about one or two other things as well, but we’ll focus on just one thing at a time today). Sure, I agree with the expression, “when you’ve met one person with autism, you’ve met one person with autism.” Because it’s just as true as saying, “When you’ve met one person, you’ve met one person.” We’re all spectacular, unique snowflakes, and autism is just a part of what makes some of us shiny.

Are my kids and I impaired by autism? Yes. Of course we are. The way our brains are wired makes it difficult to understand the world sometimes. Two of the three of us are extremely clumsy. All three of us feel emotionally overwhelmed a lot. The sensory stuff is enough to make us want to climb into a sensory-balanced cave and never come out.

Fuck it, though. No, really. Fuck it.

This is who and how we are, and it’s okay. Do I wish the world were an easier place for us? Yeah, sure. But that is not the same thing as wishing away the autism. Without it, we wouldn’t be the same people, and I LOVE the people we are. “I wish I didn’t have Asperger’s” is, to me, the same as saying, “I wish I weren’t queer.” Both labels and what comes with them are part of how we form identity. Wishing away the parts of me, the parts of my kids that are different only reinforces the idea that different is bad. It isn’t. Yay, neurodiversity! Long live the myriad of wiring options for our brains!

These are the things I wish for: I wish I had more grace. I wish I could be more organized. I wish the world felt less overwhelming. I wish it didn’t feel like the world was ending when I experience communication difficulties with my partner. I wish my children never felt stupid or incapable of success. I wish we could all stay on top of life’s expectations for us. I wish people would stop wishing us away.

Don’t get me wrong. I recognize my privilege. I have kids who talk to me, who toilet independently, who have much more potential to join the capitalist system that accords more worth to the conventionally employable. I am also far from Miss Mary Sunshine all the time, as I curse my son losing his one pair of shoes, in the house, again, or as I cry myself stupid after my daughter has had another explosive meltdown. Not every single moment of living in the house that Asperger’s built is going to be stellar for me, for them.

It’s neither curse nor blessing, though, this world of ours. We’re not special for our disability, nor am I a poster girl for being successful in the face of such adversity. It is what it is, and we are who we are. Autistic, all of us, and more or less okay with that.

« Older entries