Elizabeth Choi published an Autism Warrior Mom thinkpiece about what a tragic burden her autistic son will be for his siblings when she dies. The dehumanization starts impressively early in the article:
Grace will get the pearls passed down from my grandmother. Her twin brother, Nick, will get the woodworking tools my husband, Dan, inherited from his grandfather. They will also inherit their brother Jeffrey.
Of course. He’s an object on par with other objects.
Jeffrey was 3 when his idiosyncrasies — his fascination with spinning objects, his sensitivity to the hum of fluorescent lighting — became symptoms leading to a diagnosis. I was pregnant with the twins and folded my hands protectively over my domed belly as the pediatrician leaned forward, eyes intent on mine, and said: “I want you to understand, there is no cure for autism. Jeffrey will need care for the rest of his life.”
I bet he’d need less care if he grew up with his parents still thinking he had “idiosyncracies” instead of a hopeless disfigurement of the soul.
Firstborns are often frustrated by the disruptions caused by a new sibling, but to an autistic child who craves structure and is sensitive to light and noise, the addition of two squalling infants is a catastrophe. Lunch was sometimes delayed for breast-feeding, this door sometimes had to be closed because the babies were finally napping, and mommy and daddy were often too exhausted to read the same three books at bedtime.
I was the youngest and it was me doing the crying, but what does she mean by “catastrophic?” My mom totally read Chitty Chitty Bang Bang to me about a million times.
Jeffrey’s frustration developed into tics, like fluttering his fingers in front of his eyes. He became increasingly hyperactive and angry, sometimes even dangerous: I once caught him pressing his hands against Grace’s face in an attempt to muffle the shrill sound of her crying. When the twins started crawling, Jeffrey kicked them if they got too close to his toys arranged on the floor in a pattern known only to him.
Is she sure that fluttering fingers in front of his eyes was due to frustration? I thought it was totally fascinating how you could make objects seem ghostly and transparent if they were only visible with one eye. The way that you could make things in the foreground or background double depending on where you focused, when something is right in front of your face.
At night, Dan and I lay in bed, two 20-somethings debating ethics in whispers while our children slept down the hall. Where does compassion for Jeffrey’s disabilities end and Nick and Grace’s rights to a safe and normal childhood begin?
I wonder if he has hypersensitive hearing. When I described some fucked up social work things I’d overheard my parents talking about as a kid, my mom was surprised that I’d heard all that. I really doubt the favoritism is subtle. She puts it in the New York Times.
We begged our pediatrician to do something to help Jeffrey cope. He prescribed new medications, but also gently suggested that if Jeffrey was a serious danger to the twins, we needed to consider institutionalizing him. Dan and I immediately dismissed the suggestion. Yet on days when managing an autistic child and toddler twins drove me into the dark of my bedroom closet to weep and scream, the thought of sending Jeffrey away was shamefully enticing. Friends, family, even strangers in the grocery line told me that Jeffrey was a “blessing,” a God-sent opportunity to learn patience and compassion, and I would murmur and nod in agreement.
Did she try mirroring his emotions and body language and trying to understand what was bothering him and narrating his and her feelings and working on his emotional vocabulary? It’s kinda hard to put that effort into compassion while also daydreaming about abandoning your child. If she just had 3 small kids, none of whom were autistic, she’d probably want to cry and scream in a closet, too. Did she expect to function well on chronically disrupted sleep or something?
Eventually, Nick and Grace grew old enough to protect themselves, but they were still too young to understand Jeffrey’s disabilities. At 8, Jeffrey still liked the sensation of chewing on hard objects and gnawed the critical piece in Nick’s latest Lego structure and the arm of Grace’s favorite doll. Jeffrey had difficulty with language and often used quotes from movies to express himself, and after watching “Toy Story,” he started referring to Nick as a “sad, strange little man.” We found it funny, but Nick did not.
The twins saw Jeffrey as a Godzilla-like monster rampaging through their young lives and I struggled to point out Jeffrey’s strengths. Unlike many children with autism, Jeffrey was affectionate and gave us hugs with his trademark intensity, squeezing the air out of us while administering sloppy kisses.
Never miss an opportunity to spread a stereotype, even when it’s the opposite of what you see with your own child.
My brother called me “Beast” into my 20s because of how much I cried as a child. He found it funny. I did not.
Childhood is exactly when you learn how to act right.
By the time Nick and Grace were teenagers, their older brother was mostly an embarrassment who shouted inappropriate comments during school performances. Once Jeffrey became interested in girls, he crashed Grace’s slumber parties and tried to impress her friends by following them around while reciting the distances between planets.
When Grace complained that Jeffrey was giving her friends inappropriately long hugs, I had to concede that there needed to be a shift in the point where Jeffrey’s rights ended and Nick and Grace’s rights began. We started confining Jeffrey to his room when the twins had friends over, albeit guiltily, plying Jeffrey with treats to lessen the sting.
She’s supposed to be the one comforting her son when all the hate gets to him and he feels like an embarrassment. She’s not supposed to humiliate him in the newspaper.
I’d be really curious to know what “inappropriate comments” he shouted. For all we know, he was legitimately pointing out bullshit.
As an adult, I still struggle with most people being anti-intellectual and having no interest in amazing things like the vast distance between planets. This one time, someone told me about tardigrades surviving in space and it was totally hot.
Nick and Grace were 15 when Jeffrey graduated from high school and began the difficult transition from the sheltered special education system to the unmerciful adult world. The goal was independence, financial and otherwise, but it felt like a marathon of one step forward and two steps back. One night, Jeffrey told us that on his way home from his part-time job as a stocker at Walgreens, a stranger stopped him and asked for $10. “I told him I didn’t have $10,” Jeffrey said. “But I did have a $20 bill, so I gave him that.”
I’ve given homeless people $20 bills before. They said things like “God bless you.”
We have always believed that Nick and Grace should take responsibility for their brother when we no longer can. We have worked to engrave that duty on their hearts, but they accept it grudgingly. I wonder if we failed as parents to instill compassion in the twins, if we somehow hardened their hearts instead of softening them. Dan reminds me that few people accept familial duty with joy.
That’s the honest self-awareness breaking through.
After we navigated a labyrinth of government bureaucracy, Jeffrey now receives disability payments that cover his rent and most of his food, and qualify him for Medicaid and assistance with things like applying for jobs. It is a big help and we are grateful for it, but we still pay several hundred dollars each month to cover the community’s fee for having an on-site resident assistant, as well as Jeffrey’s clothing, transportation and other personal expenses. Dan and I set aside as much money as we can for his future while saving for our own retirement, but it is likely that Nick and Grace will need to carefully ration our life insurance payout to keep their brother clothed, fed and supervised.
We have done what we can to provide Jeffrey with a fulfilling adult life, but his world remains circumscribed by his disability. He does not drive, and has been unable to land a new job despite sending out dozens of applications. He has never had a girlfriend and still struggles to manage his hygiene.
What’s interesting is that she accepts neoliberal cruelty as a normal, expected, and justified part of life. If everyone got a basic income and guaranteed housing, would this even be a problem? We can afford it.
She’s definitely not helping her son have a sex life by putting his hygiene struggles in the newspaper.
Nick and Grace, meanwhile, at 23 are now busy young adults with romantic relationships and promising careers. They rarely ask after their brother, but when we all get together for holidays, they treat Jeffrey with detached kindness rather than the resentment of the past. We sometimes remind the twins of their duty to care for Jeffrey, and with the optimism and confidence of youth, they say they will handle it, and anyway, it is far in the future. But I know that the future has a tendency to arrive sooner than expected, and that it will not be easy.
In other words, he had a traumatizing childhood of everyone resenting him. When the kids are distressingly kind to their brother, she starts reminding them about the burden stuff. It’s fucked up.
Let’s see what the monstrous public thinks of all this. Top reader comment, from “Maine Dem”:
“Are we asking too much of the twins? ” Yes, you are. It is an unfair burden to put on them (what if their own lives are complicated, or they want to move away, what if they just don’t want to take on a responsibility that is not theirs?). You are also doing Jeffrey a disservice by making him reliant on his siblings to handle money meant for him. Have the money put in a trust and handled by a professional with a fiduciary duty.
Yes, people have no obligation to their families and you should give some of your life savings away to trust fund manager leach people.
LadyLuckyCharm is aghast:
I read the Ties column with joy and often come away feeling better about all our human struggles in this difficult world. I have never felt compelled to comment until now.
I must comment to say that I deeply, deeply, abhor and condemn the author’s attitude of forcing a disabled sibling on her other children. I do not believe at all that a child is responsible – mentally, physically or financially – to his or her sibling. They did not ask to be born to you or with a disabled sibling. I have the utmost compassion for Jeffery (I am 13 weeks pregnant, and autism is one of my greatest fears), but make no mistake: Jeffery is YOUR responsibility as his PARENT. To foist this burden on your other children is, at best, unfair and, at worst, irresponsible and cruel.
The fact that you and your spouse have made moderate but – according to yourself – very possibly inadequate financial provisions for Jeffery is the nail in the coffin about this situation. No, you do not get to pad your retirement savings; your first and foremost responsibility is towards Jeffery, and making sure he is as least of a burden on his siblings as possible. If your life insurance isn’t sufficient, do without the luxuries and buy more.
I am sorry to say that this is an example of the worst kind of parenting, and I can foresee a bleak future of, and relationship among, those three poor children, due to your own making.
Sigh…at least Susan gets it:
How is sharing this personal story in which you call two of your children selfish and reveal to the world that you did not protect them in childhood helpful or kind to any of your children?