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%.

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Musings on Music and Ableism (Inspired by Kanye West)

There are several adjectives which come to mind when the topic of the hour is Kanye West, and this week, media reports have added a new one: ableist. During a concert in Melbourne, Australia on Friday, West refused to perform until everyone in the stadium stood. He reportedly went as far as to check ID to verify that those not standing were actually disabled. Now, there are many things wrong with this situation.

1) It’s none of his business why a given person chooses to not stand during his concert. If someone has paid for A SEAT, they have the right to sit in it.

2) Not everyone who has a disabling medical condition is considered “disabled” on paper, and wouldn’t have “proof” to show anyone. My chronic pain means that sometimes I’m exhausted and just can’t stand for long periods of time. Do I have documentation saying I benefit from sitting to regain some energy? Nope. And neither do many others.

3) It is obscenely invasive to assume that people need to prove anything to attend a music performance.

The thing is, though, that even though this latest demonstration of insensitivity is pretty awful (and it really is, no question), we’re absolutely fooling ourselves if we believe Kanye West is the first and last (or even the worst) example of ableism in live shows.

I mean, for the audience member who uses a wheelchair to enter the Qantas Credit Union Arena at all implies that it’s at least wheelchair accessible in the first place. How many performers or their promoters book gigs in spaces that aren’t accessible at all to people in chairs? How many small-scale music venues can we name, without even thinking about it, which are basement or second-floor establishments, with no elevator? Even if a space has ground-floor access, where are the washrooms located? Are we telling physically disabled/chronically ill people that only those who can make it into these spaces, only people who never have to pee, have the privilege of enjoying live music?

Yeah, we totally are.

Every time someone opens a new club and doesn’t insist on ground-floor washrooms and a slight ramp to get over the lip at the door, they’re telling disabled people that they’re not welcome.

I get it. Space is at a premium, and there are many factors that go into renting venues for long-term occupancy and for one-off events. Sometimes, in older buildings, increasing accessibility is cost-prohibitive. It can cause serious hardship for event promoters who are doing their best to provide what they can for as low a cost as they can offer. But it’s still a problem, no matter the justification.

Kanye West was 100% in the wrong. But before you jump on the accusatory bandwagon, take a minute to think about who else is doing exactly the same sort of thing. Then ask if you’ve thought to call them out as loudly as you do West.

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.

The assumptions we make about “real” connections

In the last few days, this Look Up clip has popped up on my Facebook timeline at least a half-dozen times. I finally took the time to watch it after reading the feedback of several friends, all of whom raved about it. While I get that the artist’s message is one of connectedness, I’m left feeling like he’s not talking to me. 

I discovered “social media” in the early 1990s, with BBSes and Usenet groups. Rather than leading to an inability to communicate with other people, I felt more connected than I had in, well, possibly my entire life. I didn’t have to worry about the social expectations and pitfalls of meeting people in unstructured moments in time in person: I could think about what had been said, and be considerate before responding. I could work through the various potential meanings of what people wrote to me without feeling pressured to respond in a certain way. The best part was that I could still choose to meet and hang out with these same people in person, having figured out a shorthand on how to interact with them ahead of time. 

Today, I rely a fair bit on texting for communication outside of my work. When speaking is hard for me, as it sometimes is, I’ll even text someone right beside me to have a conversation with them. What the Look Up video misses is the accessibility issue of social media. I’m nowhere near the only person in the world whose social world has opened up as communication technology has become more easily accessible. Cell phones, tablets, laptops – they’re assistive technology devices for many of us, and platforms like Facebook and Twitter allow us to use the technology to communicate on a broader scale. 

I agree that balance is wonderful, and making sure that you’re happy with your level of connection with the people in your life is important. Connection comes in many different packages, however, and for many of us, looking down sometimes helps us to be able to look up. 

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.

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.

“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. 

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