As Amy Sequenzia so eloquently states: “ABA is not only abusive to Autistic children, it makes ableism and abuse acceptable. “Experts” want 40 hours/week of this and parents who don’t comply can lose their children. ABA creates a culture of normalized abuse.”
The following is a guest post composed of a series of writings by Bernice Olivas, who has generously agreed to share her experience. Hers is a harrowing story, but one that illustrates the dangers of demanding compliance on so many levels – and it is a story that needs to be understood.
It’s been two years since Nebraska’s Child Protection Services threatened to take away her children because she refused to place them in full-time (40 hrs/week) compliance-based training.
She and her husband were never accused of abuse or neglect, the only reason CPS was involved with her family was because her children are autistic and some of their behaviors were deemed “weird.” But there is a complexity to the issues that are relevant here and that seem to arise at the intersection of ableism, racism and poverty. Bernice shared, “Because we are poor, brown, and my children are autistic it was presumed that we were incompetent and unable to make the best decisions for our children.”
In response her husband and boys moved back to Idaho where they had a better system and support, while Bernice remained behind to finish her education. Although her university program has supported her in spending as much time as possible with her family, she and her family have been forced to endure a heart wrenching separation. In March, Bernice will be returning to Nebraska for the final haul. She expects it will be a full year, maybe 14 mo. It’s been a rough two years…
Bernice’s allegorical tale below, is a beautiful illustration which provides a nuanced insight into the very real concerns and threats she and her family are facing, because of the overreaching and inaccurate assumptions that are made about the appropriateness of ABA and compliance based training. There are other options to the so-called evidence based intervention that has been pushed upon this family: options that honour the child and what their behaviour and reactions reveal about their experience – options that build trust and connections and relationship – options that accept a child fully at the very place they are at, and then build upon their strengths in natural and healthy developmentally appropriate ways of learning for any child. When a family chooses these less pathologizing methods to support and nurture their child – they should not be faced with the decisions that this family has had to make.
The further adventures of Danger Baby and Destructo Boy
By Bernice Olivas
Introducing the Normalizer!
After Danger Baby and Destructo Boy defeated the evil corporate babies who were hell bent on baby proofing the world they looked forward to a break or maybe a vacation. Alas, that was not to be!
Little did they know that the CPSO (Child Protection System overlords) was plotting against them; CPSO goal was to “fix” our awesomely autistic duo through I-BITE (Intensive Behavior intervention torture enforcement). They decided that it was not okay for the Duo to get naked, or not wear socks in the winter, or be too loud, or too autistically awesome. Instead, they must conform to the standards set by CPSO. They must wear clothes ALL the time, and learn to speak like “normal” people. They must think, act, and feel just like everyone else all the time.
Our duo was in greatest danger ever so they told the Momlady and Daddyman about their secret identity as superheroes and the whole family vowed to fight CPSO together. Momlady tried to thwart them with paperwork and the power of education and Daddyman did everything he could to scare them away. Alas the CPSO was too strong and they have agents working everywhere; the park, the school, and even the grocery store. Whenever the duo behaved “un-normal” CPSO was called and even though they could find no reason to find fault with the family they used the calls as a reason to call in the Normalizer. Outwardly the Normalizer looked like a twenty-something “case manager” on one of her very first cases but she had all the powers of the system overlords at her fingertips and she was out to get the autistic duo. No child would ever be happily naked on her watch!
The Normalizer: “You WILL take our HELP or we will take the awesomely Autistic Duo away and “reeducate” them. if these behaviors continue then the system will take them away forever.”
MomLady: “And if we refuse”
The Normalizer: “The act of refusing our help puts you on our “at risk” list and we no longer need your permission.”
Momlady: “What can we do to make you happy?”
The Normalizer: “You must go to a support group and listen to other parents talk about their autistic kids as if autism is an alien who snatched their baby. You have a rotten attitude about all of this, what kind of parents let their kids be so different! And this Daddyman at home thing, it is weird—fix it! Mommies should stay at home. When Daddy’s do it it’s just too different. And stop being so brown and poor. We don’t like that. And the boys will submit to I-BITE. Mwahahahah!”
Momlady: “But that will change the awesomely autistic duo into completely different people and teach them to feel bad about being different!”
The Normalizer: “EXACTLY!”
Momlady: “But that’s so wrong.”
The Normalizer: “Normal is never wrong! It’s always right just because it is normal!”
Momlady: “Okay. We’ll do what you want.”
Bur secretly the family devised Operation Houdini. Daddyman would fly home to Idaho where CPSO was powerless in the face of the fSS (family support system) and the Momlady would stay behind and learn the secret ways of the CPSO and continue to work on mastering the power of the PhD so that the awesomely autistic duo would never be in danger again!
Phase one of Operation Houdini complete… to be continued.
And finally there is Bernice’s gut wrenching essay, which quite took my breath away, and left me weeping and struggling to relax the tell-tale lump of emotion in my throat. Bernice’s essay examines the pressure for compliance on multiple levels and shines a light on threats and dangers that arise when systems do not support the needs of those they propose to serve. This essay is a compelling work, though due to its length is not printed in its entirety. (A PFD of the entire essay is linked below.)
I don’t want to miss you
By Bernice Olivas
“But I don’t want to miss my Mommy,” My son Gareth says. He just turned eight this year. His eyes are wide and his mini Mohawk has begun to grow out. He looked like such a big boy when he got the Mohawk, he doesn’t look like a big boy anymore. He looks like a baby. He is crying and grasping my fingers. “No Idaho, please. Want mommy.”
“I’m sorry baby, but we are all done with Nebraska. It is time to go home to Idaho. I wish I could go with you but I have to stay here. Mommy will see you in June. Mommy loves you so much.”
“But it doesn’t make any sense!” He is angry now and I can’t breathe because if I breathe I’ll cry, and I can’t cry. I can’t cry. “No baby, it doesn’t.” I hold him tight one last time and then his father takes him from me. Our eyes meet and he reaches out to me with this other hand, we brush fingertips but do not hold on. We can’t hold on now, not if we’re going to do this thing,
They leave. I still don’t cry, not when they pull out of the drive, not when I can’t see them anymore, not as I tick off the miles in my head. I clean and pack and make plans and in my head I am keeping time. They are an hour away, three hours, and then six hours. It is February 18th, coincidently the day before I turn 32, and I am keeping time in my head until my children cross the state line. Once they are out of Nebraska I can feel safe. When they are somewhere in Wyoming I sit on the bathroom floor, lights off, and in a time honored tradition of women and mothers everywhere I shove a towel into my face and wail. I let it catch the tears and the keening noise I am making, because even alone I cannot unlearn that this kind pain should remain hidden.
What I don’t tell my sons and what they must never know is this
You are not safe in Nebraska my beautiful, autistic boys. Your autism baffles teachers, disturbs neighbors—your autism is too noisy, too messy, and often too naked. The way you flap and spin, the way you react to too much or too little sensory stimulus and your unrestrained, unexpected laughter are read as “unacceptable behaviors” here. Our CPS case manager does not speak body. She cannot hear I love you in a gentle head-butt, or decipher what you really mean when you repeat back commercials or movie scripts. She doesn’t understand and she thinks that your “behavior” is an indication of my neglect or abuse. She thinks that because I don’t make you wear socks with your shoes, not even on snow days, that I am neglecting you. She will not hear me when I try to explain that socks makes you itch and ache and fret and want to be free of the weight on your skin. All she sees is you misbehaving, getting undressed, not speaking when spoken to. That, my beautiful son, is not OKAY here. You are not okay here. So I must send you somewhere safe. Somewhere you will be okay.
It is so not-okay that total strangers accused us of neglect when they saw you get undressed at the park and when they see you undressed on our balcony. It’s so not-okay, that people at your school accuse us of neglect for not forcing you to wear socks even though they have witnessed the way socks make you scream, scream, scream and make you tear them off or scrabble madly at your shoes until you hyperventilate and curl into a baby ball and keen. It is so not-okay that our case manager, even though she herself has admitted that there is no evidence that we are bad parents, bad people, has said, “You need to take our help because if these behaviors do not stop your kids will end up in the system.”
And what she meant, my sons, is that I need to allow them to send an analyst to our home and your school to observe you, to find the problems with you, and then create a program to “fix you”. The state wants to teach you to comply. They will give you a treat (a reinforcer) when you are good and physically walk you through the motions of obedience when you say no. Your right to say “NO” will be trained out of you. It does not occur to them how naked and vulnerable a person is without their “NO”. Wars have been fought for the right to say “NO”. But I am supposed to give yours away, let them train it out of you for the sake of my convenience, for the sake of “good days” at school, and so that complete strangers are not made uncomfortable by your “strangeness”. NO! No! No! You are both wonderful just the way you are. But if we do not comply “voluntarily”, if I refuse their help we will be relabeled as “at risk” and I will no longer have the right to refuse their help. The threat is clear, what she meant was, if we didn’t comply she would take you away from us.
It is also not okay that we are poor and that your father is the stay at home parent. Our case manager keeps calling your daddy “unemployed” and says to me that he is the problem. He is too aggressive, to over protective, his attitude is too negative. Daddy calls her out for talking down to you. Daddy steps between you and her when she ignores your boundaries. Daddy scares her. She says he needs to go back to work. If he does the state will pay for daycare. When I push back, ask her to consider the fact that she might be overstepping some lines, she says that “everything happens for a reason” we should be more open to learning from her and the situation. She is in her early twenties, we are her second or third case and by her own admission she’s “never worked with an autistic family” and “doesn’t know anything about autism” but she assures us that she’ll “Google” it. In Nebraska your life is in the hands of a person who has spent less than three hours in your company, who has no training in autism. In Nebraska, the case managers, the anonymous callers, the school social workers are all considered the experts and the parents are treated like the enemy if we don’t comply.
So if I don’t let you go, right now, with no explanation, without saying goodbye to your friends and your teachers I could lose you. I could lose you to a system that sees you as a broken unit to be fixed or replaced, a system with a vile history of taking children out of their homes and losing them, as if they were mittens, or pen caps, or old receipts, or rubber bands.
I can’t tell you any of this because I cannot stomach the thought that you might hear, your fault, this is your fault. I know I will answer to this later when you are almost-men and you call me to account for my mistakes, as all children do. I hope you understand. I hope you don’t see my sending you away as cowardice. I hope you don’t see my staying behind to finish my PhD as abandonment. I hope you understand why all I can say is, “I don’t want to miss Gareth and Osiris either, but we are all done with Nebraska, it’s time to go home to Idaho.”
At some point after they are gone I fall asleep in the couch, clutching their comforter. The next day I go school. I am a Doctoral student at UNL, a member of the English department. I teach college students and work in the writing center. I hold a Master’s degree. According to the 2012 U.S. census just over 10.3% of the population holds a comparable degree. Only 4.1% percent of Latinos hold the same degree. Those numbers get smaller as my gender and Native heritage are taken into account. I am first in my family, on either side, to obtain a college degree, the first to obtain the Masters, the first to be accepted into a doctoral program. My Master’s Thesis was on the subject of Autism. One of the guiding Professors in my research was an expert in the area of Severe Disabilities and Autism Spectrum Disorders at the Barkley Memorial Center, University of Nebraska. My education does not protect my children. A case manager in Nebraska is required to hold a B.A but not required to specialize in social work, family services, or education. No one I interact with in child protection services specializes in Severe Disabilities or Autism Spectrum Disorders or special education. That day I teach, I run office hours, and I smile. I come home to an empty house and wonder again how all of this happened, and why…
Please read Bernice’s complete essay, available as a PDF here: I Don’t Want to Miss You – Bernice Olivas
_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.
© Leah Kelley, Thirty Days of Autism (2015)