autism mom trapped in her head behind a wall

In a sad irony, the Autism Parents who control autism’s public image have the worst empathy and perspective-taking. The Washington Post just decided to amplify this lady’s blog post.

Maya Weschler introduces herself at her blog, “The Short Bus Diaries,” like this:

Here we were in December 2007, a month and a half after my son’s birth. Exhausted, but optimistic about our future together as a family. Our son was and continues to be beautiful – so much better looking than either Mommy or Daddy. We felt so lucky – “our child is healthy, happy, and good looking. We’re pretty awesome human beings. Yay team.” Und so on und so on.

I’d say that these days, after my son’s diagnosis in November 2010, we are just barely climbing out of the mourning phase. We have tried the GFCF diet, the DAN! doctor, the ABA classroom. We did the supplement thing, and send our son to all the speech, verbal behavior and occupational therapy that we can afford (read: charge to our credit cards). I started this blog for the same reasons as everyone else out here in “autism bloggyland”: to vent, to confess, to speak the words to a mostly faceless Internet that I may not be able to utter to the moms I see in the neighborhood – the moms whose kids are “typical”.

I am a Mom to two children (son born in 2007, daughter born in 2009), wife to one grown man, and in need of an outlet on which I can express my feelings about Autism as honestly as possible. I could, of course, do this in a private journal – old school, but at least hidden away from critics and people who don’t like my blunt thoughts on this topic served up on a platter. However, part of me wants someone out there to understand what it’s like on the inside. And part of me wants other people out there in the world to find me and high-five me for not praising the heavens for providing me with such a valuable life lesson in the form of an autistic son.

In other words, the very first thing they did after having their son was eugenically pat themselves on the back. Their personal identity is wrapped up in nothing being “wrong” with their children. That doesn’t seem like a healthy dynamic, even if the kid hadn’t turned out to be autistic.

The blog traffics in a bunch of the usual cliches. One of the founding texts of the neurodiversity movement is literally called Don’t Mourn For Us in response to this type of rhetoric. They tried “the GFCF diet, the DAN! doctor, the ABA classroom.” That tells us a lot about their attitude towards autism. The goal of ABA is to make the kid seem normal. “Defeat Autism Now!” She never got past mourning the kid she didn’t have. Instead, she invested heavily in making that mourning her identity. It’s not autism’s fault they they spent all their money on treatments autistic people have protested for years. Maybe listen?

And while I love my son as powerfully as every mother should, I want him to be whole and not hidden away under the punishing mesh of Autism that surrounds him. He is in there somewhere. And I’m not convinced that he will ever be released. But please don’t tell me that life is just peachy the way it is. ‘Cause it isn’t. And this is the place where I describe why. I need this place, this freedom, and my words. If you happen to stumble across my little scroll of Autism-related thoughts, I hope you’ll be kind of enough to respect my right to speak honestly, even if you prefer your Autism-related reading to be more optimistic and humorous.

Sorry, we can’t get along. It’s war out there.

The Washington Post points us to the family’s backstory, told at length at the Huffington Post. It begins:

Greg Masucci just wants to hear his little boy say his own name.

That’s what he tells developmental specialists as he sits in an office at John Tyler Elementary School for what feels like the hundredth meeting to hash out his son’s educational goals. This time, the specialists insist the school can’t be expected to teach 6-year-old Maximus to say his name and his family’s name upon request.

“He should be able to say his name, our name … and maybe ‘Washington, D.C.,'” Greg says. “You know, just, God forbid, if he gets kidnapped.”

And maybe it’s not going to happen, and it’s nobody’s fault. What then?

Max’s parents believe there is hope that their giggly, sweet child can grow up to be somewhat independent if he receives the right education. And at age 6, they believe that his window for learning how to learn is closing.

I’m sure the kid had demonstrably learned a lot of things by age 6, and continues learning into the present day. It seems the parents have defined “learning” to mean something very narrow, which their child hadn’t done to that point.

Most moms have big dreams for their kids. Maya Wechsler has them, too, only hers are a little different.

Maya dreams of the day when her Max can sit through a cartoon. Maybe one day, Max could talk, instead of uttering a limited range of sounds like “swee” (swing) and “Maaaah” (Max). Maybe he’ll be able to show people what he wants, instead of running around a room, shrieking, his desires anyone’s guess.

When Maya really lets her imagination run wild, she pictures Max as an independent adult. Employed as a grocery bagger. Or a mail sorter. “The best scenario is that he learns how to learn,” Maya says.

She struggles to reconcile her love for her son with her dismay for his situation. “I love my son so much,” she says. But, she adds, “I didn’t sign up to be a parent of a child who will remain a child until I die.”

What exactly does a person “sign up for” when they have children? Everybody knows that their child might have a disability or get sick. The problem is that she was childish about having children, and didn’t consider much beyond her fantasy of perfect children she could show off to the other moms.

At 2 years old, Maya and Greg took Max to Walker-Jones Elementary School to be formally evaluated. Six professionals worked with Max, who started climbing bookshelves and screaming and crying. Then a therapist started hitting Max on the back rhythmically. She squeezed him from behind and picked him up, then dropped him to the floor so that his feet hit the ground hard. He calmed down. “I was just blown away that someone knew what to do to make my child shut down,” Maya says, “in a good way.”

For the next few months, Maya and Greg waited, checking the mail for the letter from the district that would explain Max’s speech problems. Instead, on Oct. 28, 2010, they got an email. Maya burst into tears. Greg did not believe the diagnosis. Max had severe autism and ADHD. “It’s like being told you have AIDS in an email,” he says.

For a few weeks, they mourned the death of the son they thought they would have.

One really wonders what other kinds of simple solutions she might be missing. Note that giving someone a back rub and a squeeze isn’t some kind of secret early autism intervention kung fu. It’s something you’d notice by being attentive. It seems like the parents were really preoccupied with Fighting Autism at the time, which involves a lot of paperwork and meetings with other adults.

Anyway, let’s move on to the piece of writing that got reprinted in WaPo:

I’ve taken a break from posting on Facebook lately. It’s only been 12 days, and I did not put my hand to my forehead and share a vague and ominous status update about why I need to step away, so maybe no one has noticed. I did so after experiencing a particularly sharp emotional meltdown on New Year’s Eve, and realized that perhaps the simple act of being aware of how other people live was not good for my emotional health.

Nowadays, it actually says in the newspaper that comparing yourself to other people on Facebook makes you sad.

My Facebook-free life was going along swimmingly because – shockingly – it’s not that hard to get on with one’s life without knowing what everyone else is eating for breakfast…until I ended up on a party-line Facebook messenger discussion among members of my old graduate degree program, where they are currently discussing getting together for their 15th reunion. I found myself staring at the conversation, wondering exactly what the hell to say to these people. Do I tell them that we are broke? That paying for my son’s therapies and child-care has ruined us, financially, so a trip to Chicago isn’t really in the budget at the moment? Do I tell them that arranging for child-care (at what age will I stop calling it “child-care”? When he’s 30, and still requires round-the-clock support, what term should I use for the uninitiated?) for a 2-3 day trip, so that my husband can still work while I’m gone, is kind of a tall order at this point? Or do I tell them that I really don’t want to sit around and have polite conversation about their PhDs and growing resumes, while I simmer in my own internal misery? Again, like my hiatus from Facebook in general, I’m going to assume that a silent retreat will be most appreciated by everyone.

I got a PhD in neuroscience and now I work in tech support doing a random web security thing. Sometimes I come across people I recognize from grad school in news articles, or I come across a paper of theirs while looking something up. Sometimes I wonder what would’ve happened if I was diagnosed before grad school and studied autism there, instead. That’s life. I’d probably have nothing to say to people at a grad school reunion. I don’t want to talk about their labs and their married-with-children life. I doubt they’d understand the first thing about my autistic black person difficulties. Just let it go. You don’t have to keep up appearances for those people anymore.

A complete stranger recently contacted me, and introduced me to some new terms that I didn’t even need to Google to comprehend: chronic sorrow and disenfranchised grief. These two ideas have kept me up at night lately, as they are apparently the academic labels for what I have been experiencing since October of 2010. Like many articles I’ve read about the experience of raising an autistic child, they are things I already understood deep in my bones. But having words for these two obstacles that get in the way of my interactions with the outside world has somehow taken my breath away, this past week.

I don’t want to sit at a table with a gaggle of “normal” moms during my daughter’s school events, because I feel “chronic sorrow”. When they gossip idly about their daily, non-autism-dominated lives, I die a little inside. It’s no one’s fault that they have a non-autistic child, and that I have a son with severe disabilities. But the distance and resentment are there, nonetheless. Also? No one wants to hear the truth, when they casually ask how I’m doing, or how my holidays were. They wouldn’t know what to do with the truth, however much I sanitize it for their comfort and digestion. People want to hear about progress. They want to hear about holiday parties and warm, snuggly family nights by the fire. At the very least, they are prepared to hear about how Junior enjoyed his new toys, or how we’ve just been laying low over the winter, watching family movies on TV and baking cookies.

You know what else entails a lot of chronic sorrow and disenfranchised grief? Being autistic, or belonging to any kind of oppressed group. It feels pretty bad to be the son of a sharecropper, while most people I encounter don’t have any concept that there was sharecropping. She’s describing the resistance other normals have to hearing about her autism mom issues. Can she imagine the resistance encountered when your problems have to do with privilege people feel aren’t emotionally capable of confronting straight on?

Really, how would one respond to this information? That we had no one to help us with our son for two weeks, while he stood on glass tables, literally attempted to climb the walls to get hidden-away food, while we screamed at family members to lock doors to basements and bedrooms so that he wouldn’t get in and break the artwork they had piled inside so that he wouldn’t be able to access it in the few rooms that are designated as Safe Zones while we visit. Or that we had to scream to one another that “I have to pee, so you need to watch him for the next five minutes”, remind family members to put both arms around their plates and drinks so that he didn’t steal their food or drink their alcohol, and that we literally had minute-by-minute countdowns until the magic hour when we could medicate him to sleep for a few hours, before he would wake in the middle of the night, in a soaked bed that would require a 3am sheet change and a second dose of medication to get him to 7am, at which point we would spend another 13 hours as zombies, trying to prevent any major disasters from taking place before the next round of medication.

Who wants to hear this shit? What do you say in response? What similar experience can you access in your life in order to demonstrate the socially-required empathy called for in a back-and-forth conversation?

It’s true that I mostly have experience with my own autism. In response I say that, in light of this lady’s public statements, I strongly suspect she contributes to the chaos with her reactions. It’s hard to believe that she succeeds at hiding such massive amounts of resentment from her son. He probably resents her right back. For all we know, he does those things because it gets a response.

It’s pretty telling that she attributes neurodiversity ideas to other parents instead of, y’know, autistic people ourselves.

There is another element that also factors into my do-I-share/don’t-I-share considerations: the Proud Autism Parents who swear that neurodiversity is a thing I should respect, that autism is another way of being, perhaps even an evolutionary byproduct that the world needs to alter itself to accommodate, rather than a world that their autistic child needs to adapt to. These parents seem to insist that I should love my son “just the way he is” and find ways to celebrate his autistic identity and not mourn the life that could have been his (and mine), if he weren’t lucky enough to be autistic. My immediate reaction to these people has generally taken the shape of an unposted, enraged Facebook response on a bad day, and a cold and silent shoulder on another day…as I weigh my public persona and the responsibilities of representing a non-profit against my instinct to shout at these people that evolution and their son’s Aspergers have nothing to do with the prison (complete with locked doors, alarm triggers, candy, and sensory toys) we have created out of our lives in order to keep my son safe, our bills paid, and reputations in tact.

To recap, she took a half-assed Facebook break and felt bad about status insecurities, so she took to the internet to defeat the real enemy: the movement that wants a more accepting world for her son.

It’s sad, but I think people like this really can’t imagine that it’s ok to be nonverbal and not contribute to capitalism. I think a strong dose of psychedelics would do them good, in terms of building empathy. Then they, too, could at least experience heightened senses, difficulty expressing themselves, and feeling ok with the universe. What is life about, really?

Believe it or not, I understand what she’s saying here:

And now I understand that this wall of silence and resentment I’ve built up against those people has a label as well: “disenfranchised grief”. When faced with this new form of identity politics, foisted upon “normal” families as well as parents like me, I am being told that I should not feel what I feel. It’s not correct. My son is not dead or dying. Autism is different, not less. Yada fucking yada. Essentially, I am not supposed to feel this way because it’s not politically correct. It’s not what a loving mother would feel. My grief for the life we all could have led–if my son was not autistic–is not allowed.

So when I want to share with the world that I am hurting, that my son is struggling, that we are suffering, these people also don’t want to hear about it. Or maybe they do, so they can remind me about what a blessing all of this is, if only I would open my mind to the benefits of neurodiversity. Either way, I remain mostly silent.

She hasn’t made the radical perspective shift needed to understand that it’s not spiritually correct. It’s not the existence of those feelings, it’s getting stuck in them to the point of obscuring love, closing her off from her son. It’s possible to respond from a more loving place than the one she’s responding from, but she doesn’t know that.

Her son is right there. She’s the one that’s trapped in her head. Her pain is real, but it’s not more real than autistic people’s pain, which she’s making worse, by poisoning the public’s mental model of autism. When I tell someone I’m autistic, I become associated with the type of imagery that comes from her writing. That, itself, makes it harder to socialize, which is hard, anyway.

She’s married with children. I realized by 9th grade that I should never have children, which is sad and makes dating harder in my mid-to-late 30s. How could she understand prolonged isolation? When I try not to live that way, it gives me anxiety having to worry what goes through people’s heads when I say “autism.” She directly increases the odds that the people I interact with will associate the word “autism” with a lot of negativity. I don’t appreciate it. It makes something difficult, more difficult. You could say that it’s a handicap in social interactions.

So yeah, I do wish she wouldn’t complain at my expense while announcing that her mind is closed to anything I’m saying. Autism stigma means that autistic kids are more likely to be abused by caregivers, like whoever’s going to take care of her son when she dies. She’s chosen a pretty destructive way of dealing with her emotions.