Few things are more surreal to the parent of a severely autistic child than the neurodiversity rhetoric that recently culminated in Steve Silberman’s book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. To call the disorder that has left our children with profound impairments in cognition, communication and behavior a “strange gift,” as Silberman does, is truly mind-boggling.
No one is contesting the achievements of the “scruffy geniuses” Silberman profiles in his book, or denying that they should be celebrated. The question is whether a comprehensive, 480-page account of “The Legacy of Autism” should have devoted more space to those with low-functioning autism than the nine pages listed under this topic in the index.
Here’s what we know about the autistic population in the United States: According to the CDC, 40 percent are also intellectually disabled. Autism Speaks reports that 30 percent are nonverbal, and a 2013 study published in the journal Research in Autism Spectrum Disorders found that over half of autistic children suffer from aggressive and/or self-injurious behavior.
So this is not a small fraction, although readers might be forgiven for assuming as much after finishing NeuroTribes. As Jennifer Senior noted in her review for The New York Times, “We don’t see autism in some of its more devastating forms.” But it’s exactly those forms that need to be confronted before concluding “that much of the suffering associated with autism is the result of the ways that autistic people and their families are habitually denied the services they need,” as Silberman does, rather than the result of brutal neurological symptoms that often necessitate a lifetime of care.
Silberman didn’t interview any parents like me for his book. If he had, he might have heard some accounts like those below, which are excerpted from a secret Facebook group for parents of severely autistic children. These were not written for public consumption: they are raw, unfiltered thoughts and feelings intended for a safe, empathetic audience. Many thanks to the parents who allowed me to publish their posts and, as one mom explained, “show this side of autism.” I am not including their names, to preserve their privacy, but I will say that no two posts were written by the same author, and that I could have included a thousand others just like these:
9/11/15: "Got a call this afternoon that [my son] attacked his bus driver—ripped her shirt, broke her necklace, and I know scared the sh*t out of her. He is strapped in the bus for obvious safety reasons, but because he was slapping his head REALLY hard, the bus driver stopped and went back to help the parapro see if they could calm him down. I'm not sure if they unstrapped him or he just got a hold of the driver because she got too close. My son shouldn't be hurting other people or himself. I'm just hoping he doesn't come down from his room until my hubby gets home..."
9/8/15: "My heart is breaking because my beautiful daughter does so well for awhile and then she explodes and hurts everyone around her, including herself, and destroys the house with her head. I had to come home from a council meeting tonight because she was out of control. She's asleep now, but who knows for how long. She's 17, strong beyond belief, she loves us, we love her, but she is destroying us."
9/4/15: "I am physically and mentally exhausted. He is 21 and has been a poor sleeper for most of his life. Since about age 17, it has been up and down, but by then I was already the lightest sleeper in the world. His OCD is so bad at the moment that he literally sleeps for an hour at a time and then gets up looking for things to 'tidy' or throw down the stairs. When he can't find anything he strips himself and his bed. I have had an ongoing migraine for almost a week and feel like I want to scream!!! People wonder why I haven't found a residential placement for him but it would be too cruel. For him and me. I can't bear the thought of him being upset or mistreated as he has no way of letting us know. He loves nothing more than being with us, especially his dad. If my husband goes to put his shoes on then B. is up and putting his on too in a second. When he goes out without him he will stand at the window and cry and hit himself. He gets into our bed every night before he goes to his own room. We try every night to get him to go straight to his own bed but he just shakes his head and if we insist he will punch himself in the head, bite himself, or attack us. When do we get a break?"
8/27/15: "I had to go get E. early again today. They had to have three teachers keep her controlled as she was spitting and sometimes ate paper and spit it at people, pinching/hitting/smacking other kids, running off, and slapped one teacher…I only cried a little this time. Guess it gets easier to take each year…"
8/25/15: "You know I love my little girl more anything but I hate autism so much. I hate that nothing comes natural; it all has to be taught. I hate the meltdowns and lashing out. I hate the self injury behaviors even more! I hate that even with meds, we still have nights where we are up all night. I hate the isolation and not having a normal life—just simple things we can't do. I hate that she can't speak or even understand me! I hate that she won't eat and lives off Pediasure! What I really want for her more than anything is happiness—to be able to take her places without all the screaming; even if she is in a damn stroller happy flapping away, I don't care—as long as she is happy! Let them stare all they want! I will always hate autism but I swear if she could just be happy or happy a good bit of the time maybe all the other sh*t won't make me so damn sad! Sorry for the vent Just in a funk right now!"
8/14/15: "OMG!!! My daughter is driving me crazy!! She will not sit still, has been trying to break into the kitchen—I've had to replace the mayo three times this week. She's pooped and smeared; she's hardly sleeping... Uuugh, three more days... Almost forgot—she won't let me turn any lights on so we are sitting in the dark."
8/6/15: "Our day has been spent shredding books we love. Tomorrow will probably be spent asking for these books."
7/26/15: "The OCD is seriously killing me. Today he wanted up on the dresser. Down off the dresser. Up on the dresser, then me sitting on the edge of the bed with my feet crossed. Who can live this way forever? And even when he's not angry, he's hitting me when he's excited or maybe wants a reaction. I get tired of trying to 'redirect to something more appropriate' and I'm just taking it now. I just go to my happy place and just take it. What I hate the most is not enjoying a single minute with my son."
7/27/15: "Wonder if your body can go into shock from being bitten and scratched so much... or is it just mental exhaustion... or both. My arms are swollen. With missing skin… in pain right now."
7/27/15: "This is how I feel. I'm not allowed to look sad or express any negative feelings especially when it comes to dealing with E's Autism. Society doesn't tolerate the brutally honest truth so I have to hide it deep inside. Except here. I fear it will be the end of me eventually."
7/23/15: "Summer is so hard. So depressed. So tired of seeing pictures of happy families on FB enjoying their days while I'm drugging my kid into a coma just to stop getting beat up for a few hours."
7/17/15: "We are on day 13 of what feels like one continuous meltdown. I can't handle this much longer. My husband just pulled him off me and now I am locked in the bathroom while he has a colossal meltdown... Dear God I don’t know how much longer I can do this."
7/3/15: "My son is 10, nonverbal, still in diapers, doesn't have a single friend, suffers seizures. I can sure bet that if he had the choice he wouldn't want this 'gift.' My younger son has had to watch his older brother destroy the house, attack Mom, kill his unborn little brother (kicked me during a diaper change). I know for some on the spectrum autism is a gift, for my son, it is anything but. I wish people could respect that."
6/9/15: "Well this is autism at our house last night—was at the hospital for hours till they were able to stitch A. up... I dropped the ball, I let this happen, I could have—should have—stopped it. I've been doing so well—controlling every single thing, avoiding his self-injurious behavior... all that could trigger him. I avoid this, I avoid that, and yesterday I slipped and this is what happens when I didn't make his world perfect."
5/28/15: "Things are so dark..I can’t see the light anymore. 5-6 hour rages. He breaks my hubby’s iPhone, dishes, our skin, and our hearts most of the time on a daily basis. [My husband] wouldn’t go to the doctor yesterday even though his hand is swollen three times its size. He said he doesn't think it's broken even though he felt a pop. D. came through the door from school melting down over a pair of gloves he left in the classroom. I managed to lock myself in the bathroom when he came after me but I accidentally left my keys on the counter. D. got out and down our street and I went chasing after him and my HUGE cat print Capri jammy pants with my Tony the Tiger jammy shirt. My new neighbors across the street—otherwise known as Mr. and Mrs. 'Perfect F*cking Lives'—were outside and I screamed at them hysterically to please help me as I ran down the street in a panic."
4/26/15: "I don't know why it feels like forever when they attack us physically. I guess maybe it's the sadness to see them so out of control and suffering such immense rage. Fear and regret I caused it somehow, physical pain, and humiliation because we are just so close to nothing in society... We are just the people who struggle... The people who live in the margin... I really feel we became invisible somehow... We can be like ghosts."