Straddling the Autistic/parent divide

The division in the autism community between autistic adults and parents of autistic children is one that I find particularly frustrating, because I belong to both groups and feel allegiance to both.

On the internet, I have encountered some intense hostility from autistic advocates who know that I’m a mother, but don’t know that I’m autistic myself. This hostility was not provoked by anything other than me being an “autism mom”. I support and identify with the neurodiversity movement, I don’t want to eradicate my son’s autism, and I am not seeking accolades for being an “ally.” Incidentally, in these conversations, I do not feel the need to identify myself as autistic or mentally ill or otherwise neurodivergent. I shouldn’t have to disclose my neurology in order to defend myself as a mother.

I have also encountered hostility from other “autism moms” when I objected to attempts to make murders (and sometimes torture) of autistic children somehow about the child instead of about the parent. Fortunately, most of the moms I know both in person and online, are as horrified by these stories as I am; but there are certainly some out there who will try to make it about how hard parenting an autistic child is, instead of the parent being a sadistic person who preys on the vulnerable.

There are things that are worth being angry about – the example I just gave is one. But most of the arguments I see online between parents and adult autistics are not about things like this. I see people from both groups starting out from a place of defensiveness and/or hostility, resulting in conversations where they are talking past each other, with very little attempt to come to a mutual understanding. Example:

Parent: “My son wears a harness that I can grab onto when he bolts during a meltdown.”

Autistic: “That’s horrible and degrading. Your child is a PERSON, not a dog.”

Parent: “Not everyone is as high-functioning as you.”

Autistic: “Functioning labels are ableist!”

The parent comes away from this conversation thinking that adult autistic advocates completely don’t understand what it’s like to parent their child, and therefore their perspectives are not worth listening to. The autistic comes away from the conversation thinking that autism parents believe their children are essentially animals. But from the beginning, both are making assumptions about the other: the parent is assuming that the autistic person is mildly affected and cannot understand their situation, and the autistic person is assuming the worst about the parent’s motivations.

Here’s an alternative version of the same conversation:

Parent: “My son wears a harness that I can grab onto when he bolts during a meltdown.”

Autistic: “Is that really necessary? It seems degrading to me, like you are treating him like a dog.”

Parent: “Yes, unfortunately, it is necessary right now. He’s been almost hit by cars so many times, and I’m not willing to take that risk. Also, he tells me that he finds the harness comforting, like a hug.”

Autistic: “Huh. OK. I still don’t like the idea.”

Parent: “I’m not crazy about it either, but I like it better than the idea of my son being dead.”

Notice how, in the second conversation, the autistic person’s severity level and the issue of functioning labels didn’t come up – because they are, actually, not relevant to the issue being discussed. Shocking! At the end of the conversation, these two individuals may not be in complete agreement, but they each understand where the other is coming from. They don’t come away believing the worst about each other.

Can’t we have more conversations like that?

Advertisements

Supermom

I have an alter-ego. Her name is Supermom.

Supermom wears makeup, which she compulsively checks in the car mirror because any imperfections in her mask might let her real self show. She dresses nicely. Maybe a little bit too nicely for such mundane occasions as grocery shopping and driving her child to therapy. The clothes are from thrift stores and from relatives who didn’t want them anymore, but you’d have to look closely to see the holes.

Supermom might be tired from getting up at 2:30 AM, but she has her shit together. She keeps detailed medical records and educational records. She makes to-do lists. She’s on time to IEP meetings and parent conferences. Usually. She schedules appointments and keeps them.

Supermom is comfortable with social interaction. Mostly. If she’s not, it’s just because she got up at 2:30 AM and she’s really tired …. It’s definitely not because she’s autistic or struggling with paranoia.

Supermom is mentally stable and does not need medication in order to function in day-to-day life.

Supermom does not have any weird political opinions.

Supermom is an advocate. She argues with doctors. She fires therapists. She files formal complaints. She keeps records and paper trails.

Supermom is involved in all of her kid’s therapies. She also implements the therapies at home on a daily basis, due to her endless amounts of energy and patience and lack of personal needs. She makes visual supports and uses them consistently.

When Supermom comes home, she wipes off her war paint, and there’s just me.

I laugh, I cry, I make terrible jokes, I feel overwhelmed, I struggle to keep my eyes open, I get mad, I yell, I apologize, I hug my son, I make silly faces, I stomp like a dinosaur. I put on a TV show and let him eat 3 boxes of yogurt raisins so that I can sit on the couch playing word games online. I rock back and forth and flap my hands. I take my meds. I grapple with self-doubt. I get worked up about politics. I slack off on therapy strategies. And I really do get up at 2:30 AM to give breathing medications and comfort and love.

I’m not sure how many people my Supermom persona actually fools – maybe no one. But I’m aware that I’m expected to try. At least try to pretend to be superhuman. And how my son is treated, the services and supports and medical care he gets, depends on my trying.

So I do. You’re welcome.

Visibility, accessibility, and judgy people

First of all, let’s get something straight: “invisible” and “physical” are NOT opposites.

A mental or psychiatric disability can be visible. For instance, when you see someone totally disheveled, walking down the street muttering to herself, you probably figure she’s got something going on mentally, like schizophrenia or a really, really, really bad day. A psychiatric disability can also have physical effects, like when you are so depressed you physically cannot get up to go to the bathroom, and brushing half of your hair feels like running a marathon; or the more extreme instance of catatonic depression.

Even more common is for a physical disability to be invisible. Examples: lupus, fibromyalgia, having a feeding tube and/or ostomy bag unless you are wearing a bikini, multiple sclerosis, cystic fibrosis, and many others. Some, though not all, of these impair mobility.

Often, the line between “physical” and “mental/developmental” disability is not at all clear (probably because our brains are part of our bodies? just a wild guess there). How would you categorize a traumatic brain injury? What about Tourette’s, which is neurological but causes physical movements? What about Down Syndrome, which is developmental but often accompanied by problems like heart defects and metabolic problems, and has distinctive (visible) physical features?

The line between “visible” and “invisible” is not clear either. The same disability may be visible at some times, invisible at others. And whether or not it is visible may depend on other people’s knowledge and perceptiveness. Does “visible” mean it must be automatically visible to every sighted person? Does “invisible” mean nobody can tell, even someone very familiar with disabilities?

My son Monkey has a disability, but most people don’t see that when they look at him. There are actually some visible signs: he wears SMOs, for instance, and you can see them over the tops of his shoes, but most people don’t notice or know that they are a form of brace. (Even higher braces – AFOs – are often covered by pants.) He wears an Alert Me band on his wrist with emergency information, but most people don’t register what it is; I’ve had another mom ask me if it was a watch. For that matter, when he wore oxygen full-time, somebody once asked me whether it was because he had allergies. (Yes, because that is a totally normal reason for a young child to be on oxygen ….???)

Basically, to many people, the only “visible” disability is when both your legs have been amputated and you’re being carried on a stretcher while not wearing prosthetics. Using a wheelchair is not enough, because if the person using it stands up a little bit to reach for something on a shelf, these folks will assume that the individual is just using the wheelchair out of laziness, or for attention, rather than because they need it.

Anyway, back to Monkey. He receives physical therapy at school. He has low muscle tone throughout his body, which means that he fatigues more easily than most kids. It also makes it much harder to lift and carry him; imagine trying to hoist a 43 lb bag of flour into a shopping cart. Now imagine that the 43 lb bag of flour has legs and you are trying to stuff those legs into the leg holes of the cart, and the bag of flour is not cooperating … a couple months ago I launched into some rather loud cursing in the checkout line at Target for this reason.

But why was I trying to put Monkey in the shopping cart in the checkout line? Because he was repeatedly attempting to elope. This whole shopping expedition, mind you, had not gone well; he was already dysregulated before we went; but there were some things I had to get. I usually tag-team with my husband, or we all go together on the weekend and I shop while he manages Monkey, but sometimes he works late or goes on business trips and I have to go to the store. This was one of those times.

Now, Monkey is a runner, which means he will suddenly break away from his adult and bolt – out of a building, into traffic. This is especially dangerous in parking lots. He was already attempting to run, so I knew that the only way I could get him through the parking lot along with the groceries without him bolting in front of a car was to have him seated in the cart. Which he is just about too big for, but technically he fits. It has never been easy to put him in these carts, but this particular day I just could. not. do. it. Physically couldn’t manage it. And I started cussing. I lost it. People were staring at me, probably thinking I was an abusive mother, and I don’t blame them.

I thought about this incident last week, when I learned about Caroline Carts. I thought about it again when I saw that our Target actually has one. If you don’t know what a Caroline Cart is, here you go.

The likelihood is pretty high that one of these days, I will end up using one of these carts for Monkey – not on a regular basis, but on expeditions like the one just described. But when I do, I can only hope that the nasty looks and comments are kept to a minimum. Because yes, my son can walk (and run). And no, he is not “visibly” disabled – unless you know what to look for. I dread a store employee or a vigilante coming up to me and telling me what a horrible person I am – the sort of thing that happens to people who don’t “look” disabled who park their cars (legally) in disabled spaces. Even more than that, I dread some mother of a child who is visibly disabled, challenging me. Because while I would be happy to turn over the cart to somebody who needed it more, I’m afraid she might think that I didn’t need it at all, that I was being callous, that I was utterly different from her. And I’m not.

We still use a Britax stroller (again, due to elopement and low muscle tone) even though Monkey is at the upper limit for height and weight. He gets tired and wants to be carried, and we simply can’t carry him any real distance; the stroller keeps him comfortable and safe.

Last Saturday, the three of us enjoyed a stroll around the mall, visited some shops, grabbed snacks and coffee. We got some looks and even a glare as Monkey climbed in and out of his stroller, as we pushed him around. I’m glad that “Too Big for a Stroller” tumblr thing isn’t still going, because someone probably would have snapped a picture of us. Dear people at the mall, my child is not lazy. He’s not spoiled. He is big for his age and has disabilities.

I’ve been unable to get into a building because Monkey was in his stroller and I couldn’t find a wheelchair ramp. I put him in the adaptive swings at the park; they are the only way he is able to swing. If no family bathroom is available, I change him in the accessible stall in a public bathroom, because I need the space. At home, he has adaptive equipment to help him use the toilet.

Physical accessibility matters for us. It affects our daily lives.

But you probably can’t see that.

Please don’t judge.

What do you do when the government hates you (sing to tune of “Drunken Sailor”)

This administration – actually, the entire GOP with few exceptions – has been, and is, conducting a systematic campaign to dismantle protections and supports for people with disabilities. Of course, they have other targets as well – immigrants, people of color, Muslims, LGBTQ. But I’m going to focus on the disability aspect, because it doesn’t get as much attention, and of course, it has a very immediate effect on my life.

Let’s look at a list of changes the administration has made, or attempted to make, specifically targeting disabled people:

  • Block grant or per capita caps on Medicaid (attempted)
  • Allow health insurance to discriminate against/price out of the market people with preexisting conditions (attempted)
  • Destabilize the insurance markets so that only people with preexisting conditions will remain buying full insurance packages, at unaffordable prices (accomplished by executive order)
  • Cut Medicaid by trillions of dollars (in process – budget resolution passed by House and Senate)
  • Cut Medicare (in process – budget resolution passed by House and Senate)
  • Cut SSDI (in process – budget resolution passed by House and Senate)
  • Cut SSI (in process – budget resolution passed by House and Senate)
  • Weaken IDEA by getting rid of established guidelines for implementation (accomplished – rescinding of 72 Dear Colleague letters relating to special education)

Regarding the last one – the rescinded letters are already in the process of disappearing from the department of education’s website. You can find a list here: Dear Colleague Letters  Since last night, many of the links to the letters have become unavailable. There’s a good chance that by the time anyone reads this blog post, they will all be gone.

Remember when the White House page on disabilities mysteriously disappeared?

I wish I could muster up a bitter joke about all of this, but truthfully I see no humor in it. There’s nothing funny about the people in control of the government having it out for you and your child. There’s just a continual ebb and flow of anger, grief, and fear, and a persistent chill.

The White House says this is about trimming away unnecessary bureaucracy. That’s not what it is. I dislike bureaucracy as much as anyone (maybe more than most, since I have to deal with it every day in the medical and school systems), but this is simply a stripping away of protections and supports from a particularly vulnerable population. A population that has fought hard, for decades, to have these protections in the first place.

I can’t get my brain around this level of selfishness, greed, lack of empathy. Sometimes I find myself staring into space asking no one in particular “Why do they hate us so much? Why?”

In reality, they probably don’t even care enough about us to hate us. Hatred expends too much energy.

Not a fan of #MeToo

Trigger warning: Ironically, this post is about the need for trigger warnings.

My Facebook feed was flooded yesterday with “Me too” posts. Some had no details, others were graphic and triggering. Really the whole thing was triggering. I’m not sure what this campaign is going to do, other than trigger some already traumatized women to relive their experiences and/or become depressed. Or maybe it’s just me.

Yes, sexual abuse, harassment and assault is rampant. Why is the onus on women who’ve experienced these things, and survived them, to open up to the world about it in a very exposed, impersonal forum like Facebook or Twitter – possibly upsetting other survivors in the process? Who does that really help?

Don’t get me wrong. There’s bravery in sharing one’s story. There are survivors out there doing powerful advocacy work.

But this kind of viral media campaign isn’t that. Most of the women (and MEN – why aren’t male survivors being encouraged to join in?) who I personally know have complex PTSD from ongoing abuse, did not post, or simply copied and pasted the original post. Probably because to do more than that was too triggering. Or maybe they don’t want everyone to know what happened to them (and you know what? That’s OK too!).

Is it just me? I looked at my feed again this morning and immediately felt the panic and depression setting in …

Who is this helping? Who is it supposed to help?

And please, if you’re going to do this and post details, PUT A TRIGGER WARNING.

Neurodiversity’s gatekeepers

I read this yesterday, and I want to link it here because it’s so good and so important: Dr. Simon Baron-Cohen Does Not Understand the Neurodiversity Paradigm

Here’s a quote from the article:

“The Neurodiversity Paradigm says that all brains are good brains and no one is disordered or in need of a cure or treatments that work to the detriment of their personhood.” – Max Sparrow

I passionately agree with this interpretation of the neurodiversity paradigm. Unfortunately, Dr. Baron-Cohen is not the only one who espouses the view that if a condition affects one’s functioning beyond a certain point (defined by whom?), it is no longer a “difference” or part of the person’s identity, but a “disorder” to be cured by any means. I hope that the people who see it this way are in a minority, but I don’t know that they are.

Here’s another example of this type of thinking:

“Autism is a natural form of human neurodiversity. Labeling it as a “mental disorder” or a “disease” has no scientific basis, has no benefit for Autistic people or their families, and leads inevitably to stigmatization, shame, and marginalization. Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations. Stop worrying about the latest changes to the DSM’s diagnostic criteria, and just remove autism from the DSM entirely, just like homosexuality was rightly removed years ago.” – Nick Walker (emphasis added)

Ohhh, OK, I get it. Having autism is fine, because it’s not a mental disorder. Better take it out of the DSM so that the stigma from all those mentally disordered people doesn’t rub off on us! And if an autistic person has a comorbid mental illness, we’ll just stigmatize them for that, not for the autism.

To sum it up another way:

Blind = “Hey can you teach me to read Braille?”

Deaf = “I really admire your culture!”

Physically disabled = “Thanks for the curb cuts!”

Autism = “Natural form of human neurodiversity.”

Mentally ill = “AHHHHH HELP THERE’S A CRAZY PERSON SHARING A DIAGNOSTIC MANUAL WITH ME GET ME OUT OF HERE!!!!!!”

I think of people who think this way as Neurodiversity Snobs. They are the self-appointed gatekeepers of the neurodiversity movement. They stand at the gate, checking everyone’s credentials:

“Ah, I see you have a job and you’re married? Quirky but brilliant? Go right in.”

“Wait a minute, wait … this says you’re psychotic and frequently homeless? I’m sorry but you can’t go in. You make a bad impression and … you’re just not really our type.”

“Hi there. Looks like those accommodations in college really worked for you! Well, go in, they’re just serving the cocktails.”

“You’re intellectually disabled? Um … I’m not sure what happened but they shouldn’t have sent you here. That was a mistake. Yeah, just head over there to the Eugenics Division, they should help you out.”

Fuck that. Seriously, fuck it.

I reject any articulation of the neurodiversity paradigm that excludes certain people because they don’t have the “right kind” of neurodivergence.

Signs that you might be parenting a medically complex child

You accidentally put Miralax in your coffee this morning.

Or, you accidentally put Thick-It in your coffee this morning.

You proceeded to drink the Miralax/Thick-It infused coffee because you were either too sleep-deprived to realize what you’d done, or too sleep-deprived to care.

Your energy level ranges from “tired” to “so tired I can’t remember my zip code.”

You send your significant other to pick up your child’s latest prescription, because you are avoiding the pharmacy tech that you caused to cry last week.

You’re on a first-name basis with the person in charge of “incontinence products resupply.”

You make To-Do lists on the discarded backs of Tegaderm bandages.

You are weirdly excited by velcro.

You own a laminator.

Alternatively, you continue to do all your laminating at Office Depot, even though you know it’s more expensive in the long run, because having other people print your stuff is one of your only opportunities for face-to-face human interaction.

All of your mom friends are online.

Your everyday conversation is peppered with acronyms that literally no one understands except therapists, nurses, and your internet mom friends. Like, not even your partner. Some therapists aren’t sure what you’re talking about either.

You spend your less-than-ample spare time educating your elected representatives about how health care actually works.

People get confused when they walk into your home for the first time, because your living room looks so much like an OT gym.

Your child’s OT asks if she can see clients in your living room while her building is being renovated.

Your child’s “pretend doctor” kit is composed of real medical supplies collected from the hospital. (“Hey, wanna put the anesthesia mask on Daniel Tiger? I sure hope he hasn’t eaten in the last 12 hours!”)

All of the ads in your Facebook sidebar are for adaptive strollers and catheters.

You cope with the oddities of your life by making darkly humorous lists about it, and instead of ending with something trite about how precious your child is (which should be everyone’s fundamental underlying assumption because DUH they are your child), you end the list with a little meta commentary on the fact that you made a list about these things. Then you laugh hysterically and take an Ativan.