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

Autism, Competence, Adding Kemal to Mustafa

A very long time ago, a mathematics teacher, Captain Üsküplü Mustafa Efendi gave his best pupil, a boy named Mustafa, the additional name Kemal, a name with a depth of meaning that I will simplify and say means maturity. This Mustafa went on to be given the name Ataturk, meaning "father of the Turks".  When our son was born, we named him Mustafa. We did not know then he was neurodivergent. We felt, if he could carry the name well, and became the young man we hoped he would be, we would add the name, Kemal. Because maturity is not born. It is earned.

I have said before that my son Mustafa is a heroic figure. Born in a day and age when having a name like Mustafa makes you the target of instant enmity, he orchestrates his life in rich, ripe, silences, punctuated by occasional gifts of a word sprinkled like salt and pepper over good soup. His hands flap as he conducts the symphony of the day that he has selected on his computer and he stands to do so. He is free to be himself at home, and because he is imposed upon so much outside our home, certain spaces, like his bedroom, are his to control except of course for cleaning them, which is a joint effort. 

The most heroic scenes in Mustafa's life do not take place in public. They aren't filmed and uploaded for viral video potential. No, those episodes happen quietly, at unexpected moments. This is the month when you'll hear the worst things about my son and his peers. He is, after all, the most apparently autistic young man. He cannot hide his neurology. So I wanted to share one of those moments because something good needs to be said about my boy right now before the landslide of negativity and fear buries us.

I have been ill, and combined with fatigue, it has made it rough to go through my scheduled days with Mustafa. He senses this and has begun doing small things to compensate for the slowness in my movements and the times when I must sit and wait. I had reached a moment when pain shot through me and I sat down with the shock of it. Then Mustafa did something surprising. He sat next to me a put his arm around my shoulders. He sat with me until the pain passed. He pushed me sideways indicating I should lay down. When his father, concerned at the sudden quiet found us Mustafa had covered me with a blanket, returned to his room, and was sitting back down at his computer, continuing to go about his business as if I was with him. He would occasionally stand by my bedroom door, checking on me.  He did not request any assistance from his father. It stunned me. His father assumed I had wrapped myself in the blankets and fallen asleep. I had not. Mustafa simply did for me what I do for him. He realized I needed to rest.  He took care of his mother.

In his life, with its professional presumption of incompetence, these moments are heroic because they fly in the face of assessments that insist data driven observation knows who he is and what he is capable of feeling and doing. His range of knowledge, capacity for empathy, or what he might do if allowed to make his own decisions to the degree he can are all glimmering in these moments of greatness.  Mustafa is eleven. What he did for me is beyond the scope of what many eleven-year-old boys today would stop to assess and do. 

A few years ago I spoke to my husband about the idea that should Mustafa master communication we might add the name Kemal to his name. I don't think we need to do that now. He has matured without the name. Mustafa kemale ermek yolunda. Meaning Mustafa is on the road to maturity.  Happy Autism Acceptance Month my son.  Thank you for taking care of me.

Love,

Mom

The Murder of Torrance Cantrell: Towards Revising the Religious/Moral Model of Disability

"[We] didn't do nothing wrong," the pastor, David Hemphill, told the Milwaukee Journal Sentinel newspaper.
"We did what the Book of Matthew said... all we did is ask God to deliver him."

Torrance Cantrell

On August 26, 2003, Torrance Cantrell, an 8-year-old autistic boy, was brutally murdered during one of a series of church exorcisms on him.  Apparently, Torrance's mother had been taking him to Faith Temple Church of the Apostolic Faith three times a week in the weeks prior to the murder in hopes of "curing" his autism. I cried even imagining what terror this child went through.

This murder is a terrible consequence of the moral/religious model of disability, which historically fosters viewing disability as a punishment, an evil curse, possession, or a spiritual malady to be fought against. Parents presented with the medical model of disability when their children are given a diagnosis of autism combine that point of view with a predisposition to the already ingrained religious model to perceive any impairment their child has as something needing amelioration. Parents who have already been exposed to years of subliminal ableism within their faith-based community life then look for any means necessary to "heal" or "normalize" their child. Autism becomes an anthropomorphic being that is made the scapegoat for the child's differences and attacked. The imminent danger is, you cannot separate a person's neurology from their brain and physical body. So this approach to disability, particularly in cases of neurodivergent children and adults, can lead to catastrophic ends.

What I have observed in accepting parents and neurodivergent disability rights activists who are also people of faith, is an active effort to educate their religious congregations on the nature of autism. Some go further, demanding acceptance and inclusion in their places of worship and the religious activities of their communities. I think advocates who worship need to go further still. Let's play what if.

What if, at the moment Torrance Cantrell was diagnosed, his mother had been presented with a resource list of faith-based organizations which understood autism and would not only accommodate her child's needs for support but provide them both a place of acceptance and hope. That single resource list might have made her a stronger advocate for her son, rather than a parent who bought into a demonizing disability model which ended in murder. It might have saved Torrance's life.

 If the parents and autistic activists are in a religious community which has revised the traditional moral model of disability to embracing neurological diversity, it may be a good idea to speak positively of those organizations so families and adults seeking religious support know there are places out there that are safe and empowering.

Inclusive religious organizations have a tremendous opportunity to educate their congregations to accommodate, support and include disabled members in their lives more fully. Community inclusion is not just tolerance, it is acceptance of differences and celebrating the human spirit.

 I applaud autistic disability rights activists and parent allies who speak out and provide templates of what they have done to bring their places of worship to a better understanding of the nature of autism and how to be inclusive of autistic people in worship without harming them in the name of curing them. I think these forward thinking activists' efforts may someday cause a quiet shift in the religious model of disability from a historical tradition of ostracizing, isolating, and breeding catastrophic attempts at exorcism and faith healing to places that breed acceptance and inclusion. I think this is the solution to overcoming this dangerously ableist disability model.

In memory of Torrance Cantrell, gone but not forgotten.

Mother's Day

Today finds me going back to why I felt the need to write a blog in the first place, and where I want to take the blog from here. It is sometimes a good thing to hit the brakes on what I'm doing, look to see where I am going and decide if I really am in such a hurry to get there.

My original purpose in writing this blog was to have a body of work for my son and my immediate family. This body of work was to be a clear statement of how I felt about my son being autistic. It was to make it apparent how much I loved him.  It was meant as a vehicle for everyone to know my wish that he be as autonomous as he is capable of being.  This body of work should make it clear to any reader:

• Our son is loved unconditionally. He is not loved despite his autism diagnosis.
• I have faith in our son and presume he is competent even when others do not.
• Whatever advocacy work I do is done to gain acceptance, inclusion, and accommodation for our son and those like him.
• That my purpose is to stand by my son and not have anything I do, including advocacy, overshadow that critical purpose.

This blog was to be proof of how proud I am to be his mother, and what an amazing person I believe he is. Mustafa has great creativity, determination, and strength of purpose. These qualities are laudable in any human being, but in him they are opening the way for him to succeed in a world where he is seen as less than the least of God's children, because he is a minority even among his peers. So as he fights for mastery over his environment, it is my task as his mother to fight for a rightful place in society for him.

I decided to set the direction of The Autism Wars blogs back on that course. To that end, I am choosing topics I think are important to him, and people I think are role models for him and examples of what we all can be as advocates ourselves.

 Today I decided to talk about people who fit that criteria; those who quietly wage war against great odds for neurodiverse adults and children, and continue to speak out and fight for all people on the autism spectrum while seeking justice for their own children and loved ones. Since it is Mother's Day, let's start this new journey with two amazing Autism Moms who don't blog.

Andre McCollins and Mom Cheryl in happier times

Cheryl McCollins fought for 10 years to have the video of her son Andre’s torture at the Judge Rotenberg Center released to the press. She continues to fight to close the ‘school’. Cheryl sued the JRC for the funding Andre will need for his care the rest of his life. Andre has never recovered. Cheryl joined protesters outside the JRC and continues to use her voice to speak out against JRC and the torture of young Autistic people in the name of discipline. Cheryl even created a petition on Change.org asking for support in demanding the State of New York cease sending students to this center.

Emily Holcomb and Mom Jenny Parker Holcomb,
photo courtesy of the Holcomb Family

Jenny Parker Holcomb was completing an IEP meeting for her daughter Emily when the sheriff's department appeared with a police complaint against her daughter, accusing Emily of slapping a teacher. Jenny had to explain that Emily was on the profound ray of the autism spectrum, nonspeaking, with intellectual disability. Emily had been so mistreated at her school placement that at one point she was restrained for 55 minutes by staff. With the help of special education attorney, activist, and father of a child with autism James Gallini, Jenny began the fight for Emily's future. Lydia Brown, who read about Emily's situation on Landon Bryce's ThAutcast blog, offered to write a petition on Change.org and that petition began a social media crisis that no one was prepared for. Assault charges against Emily were dropped. Emily has since thrived in an appropriate educational placement and community activities that give her the life skills training she needs to transition to adulthood and autonomy. Jenny realized from Emily's own horrific experience that this should never happen to anyone else. She has since led parent support groups and online action groups, empowering other parents to stand with their children and take on whoever abuses them.

Happy Mother's Day

This is the first segment in a series on people who need to be recognized for the work they continue to do for the betterment of the autism community.

Note: James Gallini, Landon Bryce, Emily Titon, Shain Neumeir are names you should know. They play very important roles in these stories, as you'll see later.