Autism, Accommodation for Disability, and Traumatic Normalization

Mu and his adult big sister in front of the Mother and Child statue in downtown Greenbelt when Mu was six years old.
Image of a child in a yellow winter coat and black slacks leaning on a young woman in a green winter jacket and dark jeans
both have their backs to the camera and are facing a giant sculpture of a mother holding a small child. ©Kerima Cevik

I try to stay out of autism parenting arguments in the community. My son doesn't fit the mold of those parenting issues being debated, and such discussions only end with my being furious at the lengths parents go to try and force normalization in their children the way Cinderella's stepmother tried to force a glass slipper that clearly wouldn't fit on Cindy's stepsisters. But sometimes speaking up saves lives and may change things for the better. So I'm going to write about an aspect of autism parenting.

Someone on social media decided to post a question. They asked if it was better to make an autistic child comfortable than to challenge them. The inquirer followed by saying this was a point of heavy debate in the autism community and someone had advised them that it was better to make their child comfortable implying that parent posting the question didn't agree with the idea of comfort over challenge.

The entire question was wrong because it was founded on the idea that normalization of an autistic child, by any means necessary, is the right ultimate goal when curing them is not possible. This ignores the reality that autism is a disability that requires, by law, just as much adaptation, accommodation, inclusion, and support as any physical disability would.

Autism is a lifelong disability. Autism is not "curable" by ABA. Enforced behavioral modification simply masks the outward expression of autistic behavior but can cause residual harm that presents in post-traumatic psychiatric disability. Parents often believe that the surfacing of mental health concerns in their autistic children expressed in anxiety disorders and PTSD are caused by autism when in fact they are part and parcel of a lifetime of no accommodation for their offspring's disability, traumatic enforcement of normalization in the guise of parental and professional "challenge over comfort" attitudinal ableism and treatment-related stressors accumulating over time.

Back to the question. Is it better to make an autistic child comfortable or challenge them?

What the hell does that mean?

Where daily life, care of self, care of the personal environment, and overcoming bars to access and disparities in everything from health services to educational equity are challenges which already exist for nonspeaking autistic youth, creating the "making them comfortable v challenging them" question as some adversarial issue dividing the autism community skews the autism conversation away from the true question.

Mu, in a gray t-shirt and gray shorts, Hispanic presenting
male with curly black hair and light brown skin uses
his AAC device, an iPad with TouchChat HD,
while sitting on our deck. ©Kerima Cevik

Why isn't the question "why hasn't the entire autism stakeholder community met and worked out the problem of how therapeutic support can be given without doing further harm to the autistic consumer, particularly when we now know that at least one generation of autistic adults have been permanently traumatized by how therapies are provided now?

When parents set incorrectly high expectations and later find they can't normalize their offspring to their satisfaction they begin a cycle of frustration based abuse that ends in tragedy.  Autistic disability rights activists discuss their own lifelong traumatic treatment experiences in the hope of sparing today's autistic children the long term damage they must live with because of these attempts to normalize them instead of providing the accommodations and supports needed to improve autonomy. If autistic parents were told their child had a physical disability that required they use assistive technology equipment like a wheelchair or cane, they would not then feel they must challenge their children to move through their environment without a wheelchair or cane. They would instead fight for the best equipment available for their offspring. Fundamental to the rift in the understanding of what autism accommodation, services, assistive tech, and inclusion should look like is this incorrect concept that autistic children must be forced to adapt to everything. This pressure increases the more a child can pass for what is viewed as normal. It increases if a child who might be able to communicate at a much higher level with an assistive technology device can produce single or two-word utterances. The goal with any other nonspeaking population is communication through AAC. With autistic nonspeakers, it is forcing two-word utterances and declaring their incompetence.

It is important not to conflate challenging a child after accommodation for a disability and forcing a child to a parent's view of what a normal person looks like. Forcing normalization is a clear sign that parent does not understand the scope of what encompasses autism as a disability and that is dangerous. Acceptance of disability is not lip service during Autism month where we can say we accept our children while compartmentalizing away the reality that they are disabled. It is critical to grasp that we are parenting disabled people. It is imperative that we be certain our children who can pass for typical are assessed for auditory, sensory, and cognitive processing disorders often missed in diagnosis because the child presents as "high functioning. It is critical to push for assessments that do not exist right now that can measure the same auditory, sensory, and cognitive processing disorders in nonspeaking autistic children and adults. Not knowing if a nonspeaking person processes what is said to them in a typical way is a major bar to any treatment, therapeutic support or communication support they need as disabled clients.

This is not a question of "comfort v challenge." It is a question of supporting decision making, educating your children about the scope of their disability and how to keep their mental health intact by using accommodations and assistive technology to support their processing and navigating a world not built for them. It means allowing coping strategies to remain in place as long as they aren't self-injurious.  It means actively seeking humane solutions to self-injurious behavior. It means when aggression occurs, understanding whether the culprit is something like your offspring being in that eight percent of epilepsy patients reacting to their medications with so-called Keppra raging.  One diligent autism mom tracked her daughter's rages and realized over time that the culprit was environmental and in fact an additive in McDonald;s fries. Once the culprit was discovered, the young woman was calm and happy.

Yet we parents are being taught that everything society considers wrong with our offspring is the fault of autism. More lives have been destroyed by this attitude than I can count.

This journey isn't about how embarrassed parents might feel that our children are disabled. It isn't about how things look to others. It is about preparing our disabled children to survive and navigate our world with as little stress and as much independence as possible. It is also about teaching them that society is also interdependent, and it is perfectly natural to need help and supports to safely navigate their lives.

Let us begin by understanding our own offspring as much as we are able. Let us realize everything we try to do with them on the excuse we are doing something for their own good has consequences.
Let us get our own headspace together so we can mentor confident, happy, autistic adults who know they are disabled and are fine with who they are.

Peace

Afterlife

The apocalypse came early. Our son was only 5 when the first bomb exploded in his life. It wasn’t his diagnosis day when we stood in shock while he played with toys in a pediatric neurologist’s office at one of the best medical centers in the world.  It wasn’t the labels they nailed to his person in an attempt to crucify him with the neurodivergence that made him forever distinguishable from his peers. The first day of the end of the world as he and all of us who love him knew it was when he came home from his early learning placement with a wound on his face and no note of explanation as to how it got there. That was the day we began the war of attrition for his safety and right to an education. But in the background, with a sound so soft that we could not quite hear it, a clock ticked away the minutes until what we called our life exploded, and life after the apocalypse began.

 Tic…Tic…Tic

Incident after incident, the unexplained injuries, the insults, the racial slurs, the unwillingness to try to educate him because by their own account he was too disabled for it to matter.
All my worst fears welled up and spilled into my sleep, flooding it with the nightmares of threats and gunfire, and a cross burning on my uncle’s lawn. The legacy of the one drop rule reared its hateful head, and structural racism came to claim my poor son, attacking him in his place of learning where he should have been safe because the ghost of his Black ancestors lived in his mother’s skin and in his face and eyes. Harm came like the four horsemen and I fought back as only a mother who knows the sound of the whip, the pounding hooves of disaster and stench of hate against her child can…

 Tic…Tic…Tic

We pulled him out of school. We consulted lawyers and learned they were more concerned with profiting off our son’s misfortunes than helping make things right. We hired educational consultants and learned they were more interested in good relations with the school district than fighting for the services and accommodations they admitted they knew our nonspeaking Autistic/Black/Indigenous/ American/Turkish/Italian/Hispanic son needed to achieve the dream of a “free and appropriate” education.  Our frustration when he came home starving each day and we couldn’t prove why built on itself until May 19th, the horrific day at an IEP meeting when they brought my lovely 5-year-old to the room and he hugged me and kept signing “food” and his cruel, disgusting teacher blithely said “um, we didn’t feed him lunch. He’s probably hungry. I’ll get some food for him.” It was 3 pm and I wanted to lunge across the meeting table and break my ages old vow of nonviolence and slap that monster WHY DID YOU NOT FEED MY SON WHEN WE PAY FOR LUNCHES IN ADVANCE AND BROUGHT EXTRA FOOD?!?  The shock of the matter of fact public revelation in the middle of a recorded IEP meeting robbed me of speech.

Tic…Tic…Tic…

New school, more harm, more lies, classrooms segregated by race, seclusion, more veiled threats, and one day, that awful phone call from another principal her voice breaking “we’ve lost your son. We don’t know when he went missing. We don’t know how long he’s been missing. We don't know how he could have exited the building.”

Tic…Tic…Tic… 

Disinterested local police, district school administrators more interested in managing the risk of a potential lawsuit and we are the only ones shouting OH MY GOD WHERE IS OUR SON? His father begins running from his office, running from the other side of Maryland towards the place where they lost our son while I scream silently over and over because he loves cars and buses and the ebb and flow of traffic and it is a cold February day and one of them says he has no shoes and no coat and I collapse in a chair but I can't hear myself because my daughter is shaking me and screaming "what's wrong what's wrong!?!" Calling the whole world because NO ONE IS HELPING and there is a pond behind the school and he can’t swim

Tic…Tic…Tic… 
Found? Some stranger, a man, brings him, wet, scared, and asks “is this his school?” The principal stutters over the phone, “Someone found him. He’s okay; he’s with the school nurse.” I look at his big sister and say the words and we rush, running to get him. The principal stands as if waiting for a physical blow from me. I look down at her, not hearing or caring what she's saying and almost whisper, “give me my son.” My husband is howling at the superintendent of schools and howling at the train that seems to not be moving fast enough and howling with the fear that irreparable harm may have been done to his youngest child and only son. Meanwhile his sister and I grab our boy, my oldest child cradling her baby brother like porcelain, nearly carrying him out the school doors although he is over half her weight and so tall his head nearly reached her shoulders and we RUN out of that hell hole and now we sit at his doctor’s office, where all the staff heard and the doctor who should have closed shop an hour ago is waiting to do that awful exam for signs of rape and we wait, wait, wait while the doctor calms him and wait, not breathing and when he smiles at us with tears standing in his eyes and whispers “he’s okay, he’s okay” his sister and I hug one another and cry and cry until he becomes worried and begins to fuss. We hug him and dress him and place him in his special needs stroller and wheel him out and someone from the staff mumbles, “we have your insurance but today’s visit is free” and it is only then that we see that the staff is standing, tears falling silently from faces that once wore the indifferent and uncomfortable expressions of those who can’t tolerate disabled children but must serve them because they mean a paycheck.

Tic…Tic…Tic… Tic… …Boom went our lives.
 Because one thing some school districts know how to do is cover up and retaliate.  Public school is no longer safe; in fact, it never was. I look at the Montessori work we did on school breaks, do a consult with a Montessori teacher and then comes the gathering of equipment and the paperwork filing and the swearing under my breath that they would not put our son in danger again. How do I take this on? How do I educate him? I am overwhelmed. The room spins.
Boom!
Our daughter changes her college plans. She stays in Maryland. She changes her major. She helps me teach her brother, becoming his paraprofessional and his respite care provider when she learns of exhaustion in me so acute I collapse. My husband works for two for a very long time. He brings home his paycheck and moonlights to bring in mine. I meet my son, without barriers, without being told how to treat him, without anyone telling me I can’t handle him or he can’t learn or retain what is taught him for the first time since his diagnosis.

He is stubborn. So stubborn I laugh in frustration. So charming I am undone. So loud with the use of body language his presence fills a room, yet so quiet that I can hear our breaths in the silence of the day’s tasks.  He and I begin our quiet, bright dance of give-and-take. I was meant to teach him, but he patiently teaches me, to tolerate, to listen with my eyes as well as my ears, to see the places, things, textures that overwhelm him, to read and prep and comfort and let him go and grow.

Afterlife is silent. 
Beyond the blasted landscape of disappointment and destroyed trust, a green sprout of optimism fights its way out. Hope after harm. He slowly begins to smile again. Year one after the apocalypse and the screaming when anyone male enters a room stops. Year three is the beginning of food security. He begins to really believe he won’t go hungry even if he misbehaves. Year four and he’s laughing on FaceTime as his father uses his lunch break to see his son each day.

Father and son FaceTime while I act as IT support for our son. ©Kerima Cevik

Afterlife is safe. 
It is warmed with our happiness and peace of mind. It is filled with the few sounds our son makes. Laughter, sometimes nervous giggles, the sound of his running jumping and hooting, the silent gestures that comprise our arguments when he refuses to do his schoolwork. Year five sees a new growth. We spend the year teaching him to not be afraid of the dark. No matter what we sit together and hold fast to one another. Never secluded again. He learns to laugh at the night and look at the moon as his friend.

Afterlife cannot be forever.
He will have to return to the outside world and the cruel, racist, ableist, creatures that live in it. The greater world is his birthright and mine. He must survive the world beyond the sweetness of afterlife. Year five we try to ease him back but schools hold grudges and his is the first of a landslide of cases that nearly ruin a principal’s career. So off we go, to another county, to begin again.

Afterlife is greener now. 
Tiny verdant sprouts of hope for his future are growing into a lush green meadow of rye, ripening to gold, waiting for harvest. The understanding in this new location is as deep as the ignorance was in the other. Trust is building a path towards our son. Are the bricks leading back to inclusion? We just don’t know.
The apocalypse is not quite, but almost, forgotten.

Afterlife is beautiful. 
But beautiful Autistic boys grow up and need to become strong men. Time for mother and father to keep opening the path to the greater world.

Life is calling.

-----------------------------------

For my beloved husband and children in loving gratitude

With thanks to Selene DePackh, because who we are is not the pain we endure, but those  beautiful things we create in spite of it.