AutisticWhileBlack: Lift Your Family Out Of Autism Mourning Culture

Image of Mu in a red and black t-shirt and black shorts
under a canopy that protects him from
insects without the use of bug repellent, posted with
the permission of the subject. © Kerima Cevik

Mourning is a word that parents, including me, have misused. Being told by a medical doctor that our son would never improve and would eventually be institutionalized caused my entire family to break down in tears of shock. When we got home after an entire day of grueling tests and traumatic news, my husband, daughter, and I hugged Mu and one another and I vowed he wouldn't see the inside of any institution. Then we helped one another buck up and find ways to teach him and enrich his life.

We need to be clear about the language we use to describe milestones like diagnosis day in our children's lives.
I said this elsewhere I am going to repeat it here. I can't tell people how to govern their emotions. My activism is among other things, against parents and carers who abuse and eventually murder their autistic children. The pattern of abuse in every case, and I mean every case, begins with the appropriation and perversion of the process and meaning of mourning.

The Kübler-Ross model of five stages of grief is itself problematic. Yet parent-led autism organizations continue to espouse the appropriation of this model and apply it to parents mourning their children's diagnosis of autism.

Quoting the article "It's Time To Let The Five Stages of Grief Die" on the topic of applying a hypothesis based on anecdotal interviews on how patients handle a terminal illness diagnosis to any or all manner of grief/mourning:

"Despite the lack of evidence to back up the Kübler-Ross stage theory of grief, its original birthplace, On Death and Dying, has been cited 15 509 times on Google Scholar at the time of writing. It has been applied to everything from the grief processes of those diagnosed with diseases like COPD or HIV, to the grief experienced by caregivers of those with dementia; patients who have amputations due to diabetes; doctors who receive low patient satisfaction scores or go through reduced resident work hours; even (and I am not making this up) the grief experienced by consumers after the iPhone 5 was a disappointment."

 And we can add to this the constant presentation of the same expectation of mourning to autism parents. Parents get caught up in a culture of prolonged mourning. They wallow in it. They escalate their own emotional upheaval by seeking out online groups and followers who perpetuate the cycle of this appropriated mourning culture such that said mourning breeds resentment that combined with chronic insomnia end in harm to autistic youth. 

So while I began with being sad at the initial news on a diagnosis day, this perpetual mourning was not a thing I did. My family was given our son's diagnosis in the most brutal and clinical way possible. But our son was right there. He deserved better and we understood that. As Mu got older we realized that the temporary reactive sadness we experienced and overcame wasn't the culture of mourning that some other groups of parents were steeping themselves in. We began efforts to seek out parents who saw their children as they were and accepted them without this constant cycle of mourning based upon inaccurate stages of grief not meant for disability diagnosis at all. Eventually, I came across Jim Sinclair's Don't Mourn For Us. After reading it, I felt that our family was on the right path, and we began to actively stay away from groups of parents who pushed this mourning culture rather than discussing what could be done to support and facilitate better lives for our son and his peers.

Mourning has a meaning that implies catastrophic loss and that, when your child is right in front of you and needs you to be present and supportive rather than grieving and disconnected, is, in my opinion, a reason for a parent to reach out for mental health counseling until they are in a better place and can see their children as they are without mourning the idealization of a child that never existed. Stepping away from this culture of mourning autistic children opens the door to self-healing and true acceptance of disability. We parents should be given a mental health roadmap from diagnosis day onward. Parents need to be certain they have themselves together when this journey begins. Whatever issues we have, individually and, if applicable, as a couple, need sorting before we can help our autistic children. That begins with the culture presented on diagnosis day. There is no room for medical professionals abandoning hope when the potential of an autistic nonspeaking child is not yet measured. Dumping pamphlets on parents and sending them on their way is not the answer either. We are doing diagnosis day the wrong way. We are creating the beginning of this culture of perpetual mourning that fossilizes into resentment and may potentially escalate to violence against autistic children and youth. 

I can't speak for everyone. But when my family made a group decision to step away from the parent mourning culture, we began to see progress with our son that professionals were not getting from him. The most important gift any parent can give to their disabled offspring is the understanding that they are loved, they are capable, they are competent. That can't happen if we insist on mourning what we imagine they might have been if disability were not part of their lives.

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

Meltdowns Over Meltdowns

Mu looking away from the lamp in the living room. Noticing this we removed the lamps.

Sometimes, all of us have meltdowns. Not slight upsets, or moments of rage. Full blown, life sucks meltdowns. If you don't carry an autism label and you don't harm yourself or others while having them, they remain private moments of vented frustration one may or may not be ashamed of. Hopefully, no thoughtless friend or family member will live broadcast your meltdown and we won't see it on Periscope or Snapchat.

Like steam escaping from a pressure cooker, once the meltdown is over, life goes back to being lived.

The problem with the concept of melting down and people like my son is the trifecta working against their right to show upset to any large or small degree. That would be the triple stigma of an autism label, not being able to speak about what is frustrating to such a degree that meltdown results, and being a large teen compared to their peers. Add to that my son being a person of color, and specters of possible meltdowns and all the potential imaginary damage that he might inflict during one sends people who are supposed to educate or help resolve his health issues into a fear-laden fantasy of endless catastrophic possibilities. Those possibilities drive critical decisions about everything from where he should be educated to what kind of quality of healthcare he gets and he suffers the consequences for this fear-based policy making in his exclusion from things that the ADA and IDEA are supposed to be there to ensure he is included in.

Like all humans, he loses patience and loses his temper.

He must be allowed to express that to some degree, as must we all.

It does not follow that every planning work about him should lead with how to restrain him, chemically or otherwise. This drive to drug him or place him in the care of men who resemble NFL defensive linemen "just in case" is one of our greatest challenges to counter and this makes his options as he grows older unjustly limited by what people imagine might happen should he lose his temper. We have refused several potential respite providers whose solution to our son's size was to assign someone to him large enough to "restrain him" if he should have a meltdown.

Contrary to popular belief, he's actually not a giant, walking, perpetual, meltdown.

I was saddened when even an activist who I respected, after a meeting, made a snarky comment about potential holes in the walls of any house our son might live in.
Really?

There were no holes to see in our house. So where did that remark come from? I guess it came from the presumption of his degree of disability naturally resulting in wall breaking. Not that damage to property doesn't or can't happen when someone neurodivergent has a meltdown. Sometimes autistic people get frustrated. It is a disability after all. And that activist should know. They were autistic too.  In short, most people, even those who should know better, look at our son and see this:

The Hulk Wallpaper, from The Avengers, Age of Ultron © Marvel Comics Group

Imagine what life would be like if your employers, your primary care physician, your dentist, your spouse always kept an adult size papoose handy "just in case" you lost your temper while at work, getting vaccine boosters, or coming in for teeth cleaning. Everyone on edge, expecting that eventually, you would turn green and rip your pants and when that happened, folk have to be ready to wrap you in a blanket or sit on you or call out the National Guard and thereby keep their walls hole-free.

This is what I am supposed to accept as the reality for our son.Yet they cannot understand why I would find such options inhumane and unacceptable. So let's go there. Let's discuss a moment when Mu just couldn't take it anymore.

We've had a hellish 48 hours recently. It began with a simple, irritant. A creature, either of four or two legs, set off a car alarm in the parking area right in front of our house. At an ungodly hour. When Mu was making a valiant effort to fall into an exhausted sleep. That was followed by too many emergency vehicles speeding to some traffic accident too close to this neighborhood, then dawn breaking and the HOA deciding that this would be a great day to mow every shared lawn space on this massive property. Mu was reaching the limits of his patience when a nearby neighbor, getting ready to leave for work, decided the entire neighborhood really needed to hear his taste in music.

Mu in StarTrek robe, with permission of the subject
 ©Kerima Cevik

What pushed Mu over the edge was in fact, me. I was walking into his room and took a step forward that sent pain searing through my hip so sharply I gasped and involuntary tears poured down my face. Horrified, he went into full meltdown, hitting himself. I quickly checked myself, made my expression as calm as I could in such pain, and repeatedly whispered, "it's not your fault, it is not your fault," until he looked at me and saw me smiling through my pain directly at him. He stopped immediately. A shy, hesitant smile began and I relaxed. I waited seated on the edge of his bed for the pain in my hip to crest and decrease. I suggested a shower might make him feel better. Running water and the StarTrek robe, a birthday gift from his big sister, sent further relief to him. "Let's get you snug in bed and try having you sleep again," I suggested.

When he was tucked in, his favorite music playing on his iPad, I leaned heavily on my cane and limped from his room. "Goodnight, son" I uttered. I moved two slow painful steps down the hall when I heard the words "I love you" waft from his room.

I am the most fortunate of parents.

He lets me know when he's angry at himself. And he lets me know he loves me. That is enough to let me know that this time, my educated guess about the trigger for many of his meltdowns is nearly spot on. That means I can truly work towards a resolution to future upsets by knowing why they happen.

No one is doing research on this. We are simply treating our loved ones like aggressive animals who need obedience school. That needs to change.

Someone I respect greatly told me that caring for a disabled person with intense support needs is a backbreaking, heartbreaking, thankless job. I agree it breaks down the body prematurely. People around you break you down mentally if you allow them to, and usually the ones thinking they are operating with the best of intentions do the worst damage. They demand to know what is wrong with your loved one, then immediately follow with things like "I'm so sorry." My favorite response is "excuse me why are you sorry?" "He's disabled, not dead."

While that may sometimes begin a needed conversation about ableism, the cumulative effect of it is like any form of gaslighting. It is something a parent must counter for their own mental health security. I won't go into having to fight against disparity in everything from health care service quality and delivery to educational supports. It wears down the spirit.

I have a son who demonstrates his gratitude for my care. Many parents don't ever hear that gratitude. They might see it in some fashion, a smile, and eye blink, a squeeze of a hand. But they never hear it. I know what this means emotionally. To know that your son wrongly believes when you suffer it is somehow because you're caring for his needs and being his support staff is a jolting revelation. I see his gratitude in the use of words he rarely feels the need to utter, in his displays of affection reserved for only three people in the entire world, in his attempts to increase his independence. His ultimate love letter, the performance art of his iron will to survive and live on after I'm gone is in his herculean effort to master small but critical life skills.

To understand that my son blames himself for my aging, for a life of harm visited upon me when I was very young because of my race, is heartbreaking. But armed with this understanding, I am able to reduce the dreaded meltdown episodes everyone else seems to fear to events so rare and so brief that when they do occur we are no more surprised than we would be if we had a bad day and just couldn't take anymore.

The criteria for what meltdowns are, why they happen, and exactly how to work with the autistic teen or adult towards a reduction in these events are never a focus of patient-centered research and they should be. Meltdowns are treated like the Gamma radiation that drives the Hulk, and our loved ones are discussed and managed as if any moment they will lift cars and burst through walls, and the National Guard must be called or the entire nation will be destroyed.

This is our story, not the story of another mother and her nonspeaking autistic son. I don't profess to have a "cure" or solution for these bouts of frustration either. I just hope that what Mu and I decided to write about meltdowns begins a better dialog than past articles like the Washington Post's "The Dark Side of Autism." We cannot act as if self-harm and harm to others is a pathological certainty; we need to  begin working towards a true understanding of what causes this state of desperate angst and fugue and thereby learn how to help our loved ones navigate it without chemical, behavioral or physical restraint. What we've done to date is a sort of traumatizing band-aid over the entire meltdown event. You don't force a band-aid on steam escaping a pressure cooker. You move to let steam safely escape. Our approach seems very wrong.

As for Mustafa and I, we are truly good. All the lies about testosterone as Gamma radiation igniting him into a raging teenaged Hulk were so much fertilizer. The truth of puberty and meltdowns? Well, he has acquired a great deal more facial hair. He may need to find gainful employment soon as he is eating us out of house and home. Also, he still doesn't clean his room.

In other words, he's acting like a typical almost 14-year-old.

Now if we could only get the rest of the world to calm down and not stereotype him, we might get some serious quality of life improvements and more stress-free community inclusion going forward.

In the meantime, he lives in a home where all human emotional moments are accepted, love is as abundant as understanding. and this seems to make those episodes rare indeed.

Peace.

Autism Month Essays: Who Cares What Causes Autism?

Mustafa N. Cevik asleep at a public library @Kerima Cevik

I have this rather unusual skill set, a result of a fairly odd life. One skill was learned when I was a freshman in college. One of my professors was a research psychologist. After I got top marks in his Psychology 100 course, he appealed to my university to allow me to take a 400 level psych course with a lab. His goal was to get me motivated to change my major to research psychology. During that second semester of college, I learned how to read and analyze research papers. This professor was a speed reader, a talent he tried to encourage in us. He could blaze his way through the latest issue of Scientific American and tell you what was woo and what was not in less than a half hour. Bear in mind this was before the time of the Internet and instant global access to research papers across all disciplines.

I never pursued research psychology. I thought my ability to review research papers a rather superfluous skill until my son was diagnosed a multiply disabled nonspeaking autistic. My husband was working at Johns Hopkins then, and when Kennedy Krieger failed to provide enough answers I began to dig into the research with a passionate determination to find answers. My old psych. professor would have been proud. Though I'm no speed reader, I separated the woo from the valid stuff pretty well. And my was there a lot of woo. 

This reading of research papers led me to seek evidence-based sites on autism. Along with that need, I wanted to find sites that presented a humane approach to autism.  I began to read blogs like Left Brain Right Brain, The Joy of Autism, the original Autism Diva, who was an academic (someone else appropriated the name and is using it now sadly), Kristina Chew's posts on Care 2 and what is now We Go With Him (her son Charles was so much like my son), and all that lead me to a now-archived site called neurodiversity.com. 

Mustafa at age 5, in his wheels, waiting for the school bus @Kerima Cevik

I had tried to plow my way through sites like Age of Autism. They were so depressive that I could not read more than a few paragraphs before deciding all that was just not good for our family. The general theme at the time seemed to be a centralized location for parents to vent about how awful life with their autistic children was, that vaccines were the cause of it all, graphic descriptions of  their children's private health-related crises and episodes, and how brave they all  were for bearing up under the strain. 

I think my abhorrence  for AoA was exacerbated because I'd had a horrible encounter with an autism service dog provider who was all for our family coming up to Northern Virginia to match our son with a good dog and train them to work together until she learned his name was Mustafa. From that moment on it was one insult after another in a torrent of Islamophobic ignorance until fed up, I told her a five-year-old United States citizen who was both nonspeaking and multiply disabled was not a terrorist and hung up on her.  In frustration, I wondered if I could train a rescue dog on my own. Had anyone trained an autism service dog on their own? Finally, I came across an article by someone named Jim Sinclair, an autistic educator who explained how to train a service dog on one's own. That is how I found Sinclair's essays  "Why I Dislike Person First Language," and  "Don't Mourn For Us." I learned that the latter essay had been read at a conference in Canada.

Mustafa at age 9, representing The Baltimore Ravens ©K.Cevik

While I tried to decide whether we could even afford to maintain a service dog, and how I would have the time to train a dog and meet our son's intense support needs, we, like many families of color, learned that when your loved one is nonspeaking and disabled, those with power over them in schools can harm with impunity and without consequences unless said abuse is caught on camera. 

Sometime in 2008, I heard this young autistic college student say "who cares what causes autism?"  during an interview and I felt slapped. What the hell did he mean, who cares? I think it was during an interview on Good Morning America. I was so annoyed then that to this day I can't recall for certain. I read one of several other interviews with him to my husband, a habit of news reading we both do to help one another keep up with things while attending our son. 

Seriously, what did he mean who cares? Cheeky young upstart! But my husband said at least he wasn't acting like autism was the bane of existence and our son would be some useless sack of potatoes we were going to carry on our backs the rest of our lives. At least someone was saying something that wasn't negative. Of course, we were certain he had no clue about our day to day lives as parents of multiply disabled autistic children. Let him fight the IEP teams and the bigots, the Islamophobia and the school bullies and take the kick to my stomach my little son inadvertently landed when the mall overwhelmed him and I was fighting to get him out of there and into a calmer place as quickly as possible. 

So whenever we ran across this guy in the media going on about autistic voices, I was skeptical but did try actually listening to what he said. "Nothing about us without us?" Well, I agreed with that part. But he could speak, read write, eloquently.  Our son could not. But that sentence just kept popping into my mind :

Who cares what causes autism?

Later we heard the cheeky upstart was nominated to be the first openly autistic member of the National Council on Disabilities.  Apparently this young man was attending college in Maryland all this time. I'd never met him. What we thought was "good for him." But we didn't see how that would help our son. They were very unlike, weren't they? We thought meh. Different diagnoses. This Mr. Ne'eman had a dx of Asperger's Syndrome.  He wouldn't care about our son enough to drive the policy changes he really needed. Nope, we were still alone against the world, our son and us. And that damned statement popped up again  like a song that lingers in one's head. 

Who cares what causes autism?

See the truth was research on autism all this time was aimed not at understanding why our son was unable to use verbal speech, or why he had a sleep cycle disorder, or a very weak immune system, or chronic intractable skin rashes and IBS that no one seemed to be able to determine the cause of. The research didn't find more accurate ways to measure intelligence in nonverbal individuals. There was no effort to develop an auditory processing assessment scale for nonverbal autistic children and adults. There was no way of testing our son for facial agnosia but therapists were demanding he look them in the eye.

 The research was all aimed at finding a genetic marker to autism that could allow a test to be administered that would effectively obliterate future generations of autistic children before they were born by letting parents know they were carrying an autistic child and giving them the option to terminate the pregnancy. That along with research toward drugs that reduced overt behaviors that might mark an individual as autistic was where the money was going. No research was being done that would improve our son's quality of life. A great deal of effort was being made to generate drugs that might provide degrees of chemical restraint and compliance for autistic children with behavioral challenges. Obscene quantities of research funding were being used to determine whether there was a link between vaccines and autism. The injustice of that angered me. I found myself thinking :

Who cares what causes autism?

Through a series of events, I ended up meeting the cheeky young upstart. The day we met in person there was no doubt he was autistic. As he walked away from me with a gait very similar to my son's, I realized this clearly. I next saw him at an event attended by other autistic adults. When autistic adults are together in a great group, they relax. When they relax, their concern for one another, their mutual understanding of one another's challenges and support needs, that empathy that is uniquely autistic, is apparent. No one needs to present themselves as someone they are not in those moments, and I became aware that I was given a great gift that most autism parents should be given. Maybe some of you believe that you've seen a gathering of many autistic people. Not like this. This was a gathering completely controlled by autistic adults who understood everyone's diverse support needs and worked to accommodate them. They were patient  with one another in a way that parents and professionals are not. So I kept thinking :

Who cares what causes autism?

Most gatherings of autistic young adults and adults are run and controlled by parents, service providers, and organizations who wish to provide spaces for autistic youth to practice normalcy and social skills. So even events billed as recreational are actually treated as passive therapy and "passing" opportunities. Parents judge other people's offspring during these events by how distinguishable they are from their peers. The more blatantly divergent a child is, the more "help" they are still thought to be in need of and the pity and condescension are felt by those young people. Trust me. Some parents even thoughtlessly shame other parents by demanding function labels to see who is more 'severe,' whose children may not have won the chess tournament, or whose offspring are unable to stop stimming.  That is not the kind of autistic gathering I mean.

This event was so very not that.

Flyer for the event at Georgetown U. reads"Autistic
Empowerment: The Civil Rights Model ©Lydia Brown

Autistics shared coping strategies, new technologies, and problem solved for one another before and after the event. I was part of a panel of speakers and one of the speakers, Hope Block, was a nonspeaking autistic, like my son, and typed to communicate. I had the honor of having Ms. Block seated to my left and Ari Ne'eman, the cheeky upstart, to my right. When Lydia Brown asked if I would like to participate in an event they were organizing I had no clear idea that was going to happen. When it was all over, I turned to my left and thanked Hope for being there representing my son. She locked eyes with me and hugged me. I was overwhelmed. There was so much caring during that panel. This is a single example of one of the many reasons I get so frustrated with people declaring autistics lack empathy. Empathy requires this care and concern something that was front and center throughout that evening. 

Who cares what causes autism?

Eventually, there came a day that Ari Ne'eman met my son. It wasn't a good day for my son. At all. But Ari did something that day very few people had in my son's entire life. He introduced himself as he would to anyone my son's age. He shook our son's hand. 

Mustafa Cevik, large and in charge, in his wheelchair at
his big sister's graduation, age 12. @C.Nuri Cevik

Most people who meet our son are intimidated by the combination of his nonwhite identity, his visible neurodivergence, and his size. Our son is a body language reader. He senses their fear and in response believes there is something to fear and therefore becomes shy, then nervous, then agitated. Ignorant people, upon meeting him, have had the nerve to ask how I can be homeschooling and managing our son without help. They never realize the obvious; he isn't hard to manage at home. And this implies that our son is actually not as others perceive him when they see him for an instant in time, or when his incredible patience has worn thin. He is more than what he appears. I don't believe a single author of  recent histories on autism could manage to engage Mustafa long enough for a handshake much less communication. He doesn't like being touched unless he initiates the handshake. He is at times painfully shy and always unsure when first meeting someone. He has learned the hard way that people can't be trusted. Yet he shook Ari's hand. Only two other people managed a response from our son that day and one of those two was a petite autistic woman.

Who cares what causes autism?

Sometime after all these events, I realized that the types of research papers I was reading changed. The trips I was taking to Annapolis had a different purpose. I am not certain of the moment when the cause of our son's autism ceased to matter to me. I don't know when top priority became making sure that our son had the same rights in our society that everyone else did. I wanted my son to get the education he deserved. I can't recall when I said to myself that I didn't want any more teachers educating him who had so little regard for him that they'd say "oh who cares if he missed a trip to the pumpkin patch, they don't remember anything anyway." as his preschool teacher did. When was the instant I said my son deserved better than that? I think it came when I knew my son remembered every single place he'd ever been and ever single thing he'd ever done. I knew this from his reactions when we were on our way to those places. He knew where to go, even when I, who have a terrible sense of direction, did not. 

At some critical moment, I left the blame game behind. I just couldn't accept the myths being put before me about how I should view autism and therefore how I should think about my son.

I couldn't mourn for his loss when he was right there with us. No one took him from us, no one kidnapped him. He's a really cool dude that so many people are uncomfortable with because he can't hide his neurology. No one takes the time to try and get to know or understand him. That was the reality I lifted out of the woo of all the autism rhetoric of the past to reach this moment. Our son was here, lived, was and is loved, deserved to be respected.

Who cares what causes autism?

Can you understand what Ari Ne'eman meant in that interview? I don't care what caused our son to be born divergent. I care about helping him by ensuring he has the best quality of life he can achieve. I want to help him be as autonomous as possible. I don't believe the myth that my son's life is forfeit and several levels of hell await him should I die any more than I would for my grown daughter who does not carry his disability labels. We went from hopelessness and people screaming "mourn him" and "cure him" at us to understanding that once all that wasted energy was freed, we could focus on truly helping our son. 

Who cares what causes autism?   

I don't. It's an incredibly joyful and liberating place to be. Join me.

Resources:

Searching for autism blogs: 

http://leftbrainrightbrain.co.uk/

http://joyofautism.blogspot.com/

http://www.esteeklar.com/

https://www.youtube.com/user/autismdiva

http://autism.typepad.com/

https://kristinachew.wordpress.com/

http://www.neurodiversity.com/main.html

Jim Sinclair's Don't Mourn for Us

http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR1/html

Concurrent topics in the autism conversation:

Identity First Language:

Jim Sinclair

http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/

Lydia Brown at Autistic Hoya's posts are on Identity first are also excellent: 

http://www.autistichoya.com/2011/11/identity-and-hypocrisy-second-argument.html

http://autisticadvocacy.org/home/about-asan/identity-first-language/

Prosopagnosia/Facial Agnosia

http://www.humanuniqueness.org/do-you-suffer-from-face-blindness-seven-signs-and-symptoms-of-prosopagnosia/

Unstrange Mind's Sparrow Rose Jones'  excellent post on Non24

https://unstrangemind.wordpress.com/2014/11/24/too-many-hours/

Back in the day, on Ari Ne'eman:

http://abcnews.go.com/GMA/OnCall/story?id=5033594&page=1

http://magazine.umbc.edu/umbc-magazine-winter-2009/abnormal-ambitions/

http://www.newsweek.com/ari-neeman-and-controversy-over-autism-cure-222706

http://www.newsweek.com/could-gene-test-change-autism-79713

Dear John (Elder Robison)

Dear John,

Remember during the efforts for the freedom of Reginald Neli Latson when I said that I was for the first time, doing something I thought I would never do; and then, I posted something you wrote and shared it on social media? When you asked what drove me to make such a statement I wrote back that our writing is entirely different as I write about the marginalized populations within the autism conversation?

I need to also say I avoid reading some of what you write because I wish to not respond emotionally to it and be hurt by your words. I occasionally forget my vows to avoid your content and read something you write. I then regret doing so. Not because it isn’t well written, but because I view the world so entirely differently from you that when you make a statement from that large platform you have, and that statement has the potential to harm people like my son by influencing the way people view him and his peers, I get angry.

Here is an example, from a blog post for Psychology Today titled “April is Autism Awareness / Acceptance Month.”  You write, “We may have gifts too, but disability remains the basis for diagnosis. Some autistic people are rendered non-speaking by their condition, and I can’t imagine who would celebrate that. Others live with significant medical complications like epilepsy. I’ve yet to meet anyone who celebrates that either.”

Crohn's patient Bethamy Townsend Celebrating her honeymoon
and  rocking a Bikini with colostomy bags credit HuffPost UK

Let’s just pause for a brief statement on living with significant medical complications. I live with Crohn’s disease and other health issues. I have survived a great deal. I celebrate being here, as does my family each day I outlast expiration dates, because I was told I would neither have children nor live to age 30.

When you write about nonspeaking autistic people, people like my son, your writing perpetuates the same ableism that people who are not autistic (and have no concept of what the experience of autism is for nonspeaking individuals) does. Have you asked a nonspeaking autistic person if they wish to celebrate? Not being able to use one’s vocal chords to produce speech does not mean not being able to think or communicate. Over and over again, human beings demonstrate neurological competence in the face of medical diagnoses that negate competence. We have examples like Jean-Dominique Bauby, who produced an entire book after waking from a coma and while being paralyzed such that only one eye functioned.  Your statement discounts the research of British neuroscientist Adrian Owen, who, to quote an article on brain activity:

“ …described a patient who showed all the clinical signs of a vegetative state but whose brain activity suggested a considerable degree of consciousness. Horrifyingly, the report implied the existence of patients in a state worse than the usual locked-in syndrome: conscious but without any means of expressing it to the outside world, not even through the batting of an eyelid. While demolishing established clinical rules, this research also carried a message of hope: brain imaging was now sensitive enough to detect the presence of a conscious mind and even to reconnect it with the outside world.“

This news is cause to celebrate. What it means is that some measure of neurological competence can now be detected by brain imaging. That means a greater population of nonspeaking people have the potential to be understood whether they speak or not. Evidence like this urges us to presume competence exists in nonspeaking people and respect them accordingly.

Martin Pistorius and wife, Joanna credit NPR

This statement you wrote ignores what autistics like Carly Fleischmann, Emma Zurcher-Long, Henry Frost, Amy Sequenzia, and nonspeaking disabled adults like Martin Pistorius stand for, and what they
say when asked about being a nonspeaking person prior to finding a means to communicate. All say that they are presumed incompetent, maltreated, and were entirely dismissed prior to being able to let the world know that their brains understood what was being said about them and what was being done to them. We have seen a brain command an exoskeleton encasing a paralyzed body to kick a soccer ball. We have heard people who learned to type and use AAC to communicate tell us that being in what medical professionals define as a vegetative state, or being a nonspeaking person, does not mean you don’t think, feel, and understand, and yet you still see no cause for people like my son to celebrate?

My son’s very survival is a miracle. He doesn’t have to prove his competence by demonstration of savant talent. Pity is not wanted or required. You don’t know him. I do. He NEVER gives up. He overcomes his fears daily and takes great personal risks to reach out and communicate with us. Nearly everyone in society doesn't feel his life is worth celebrating. That includes some autistic adults who use verbal speech. But our family feels the way our son lives his life, and his repeated demonstrations of personhood in a world that denies him competence, make him a heroic person. He is a stronger person than anyone I’ve met. I’m over 50 and have travelled extensively, so when I say anyone I mean anyone in a very large pool of human beings. I know I am not alone in being a witness to the greatness of a human spirit as it overcomes so many obstacles and shouts with all means available to be heard. I am so sorry you do not feel that is worth celebrating.

It is neither my intention nor my wish to deconstruct your entire piece. I only hope to demonstrate one of the reasons there is this canyon divide between how you and I view autistic people like my son. He doesn’t just exist. He lives in bright, live, movements and gestures that communicate his joys, sorrows, struggles and victories.

Each April we remember all we were told he could not and would not do that he has already done. We celebrate his right to personhood not qualified by a savant skill to justify it. I will continue to do so. Because he, like so many others I’ve met who are out there demonstrating their competence everyday, are worth it.

I don’t call the month of April Autism Awareness or Acceptance Month anymore. I call April the month of Mustafa and his neurotribe. I call it the month of possibility. The month of pride in obstacles overcome, and the month of the idea that autistic can be an identity without qualifiers or conditions, deserving of respect and worth celebrating.

Of course the public needs to be educated about what autism is, but that is because what we call autism continues to change and at each evolution the definition of what diverges and what that means changes with it. Of course we need help. I don’t think anyone including my son would deny that he needs accommodation and supports to access our community. He knows I am aging, I tire, and families need help too. But that doesn't mean that who he or his peers are should be denigrated or thought of as unworthy of celebration because it diverges from those autistic people who are less distinguishable from typical peers.

I will try, going forward, to read more of your words. Honestly this is the only way in which I can understand what you wish to communicate fully. In exchange, I ask that you try reading the words of nonspeaking neurodivergent people who communicate by other means. Reach out to them and use your platform and your words to help rather than expressing you see no cause to celebrate the idea that they are nonspeaking.

I think this would help us both understand one another better.  Happy Autism month, John.

Sincerely,

Kerima

Kudzu, #AutismSpeaks10, & The Autism Wars

When my son was 2 years old, something pervasive, noxious, and invasive entered his life and ours. No, I don't mean autism. I mean Autism Speaks. Autism Speaks was quite literally the kudzu of the autism and autistic communities.

 

Clemson University researchers are nearly lost in the overwhelming cover of kudzu vines, which have spread over every surface, object and tree in the area. (Credit: Clemson University News)

First I should explain what I mean by kudzu, for those who may not know. Here's a quick primer. Quoting The Weather Network's article,  kudzu is the

"Plant scourge of the South adding more carbon dioxide to the atmosphere, aiding in its own spread"

Specifically:
"It quickly covers the ground, buildings, and anything else around, blanketing fields and even climbing up trees. Any plants unfortunate enough to be overgrown (including trees) are deprived of sunlight by the dense cover of kudzu leaves and they quickly die out. These vines now cover over 3 million hectares of land throughout the U.S., mostly in the southeastern states - Georgia, Alabama and Mississippi - but it has spread south into Florida, west to Texas and north as far as Ontario. "

"While these growths have taken on epic proportions, that's not the only problem from kudzu. It's already been shown that kudzu causes more nitric oxide (which is also a byproduct of burning fossil fuels) to be released from soils, which has caused an increase in ground-level ozone levels during summertime heat. In addition, as the plants continue to spread northward, especially with climate change, they are actually increasing the amount of carbon dioxide released from the soil into the atmosphere, introducing a feedback loop. "

"According to Malcolm Campbell, a professor and the vice-principal of research at the University of

Kudzu seed pods credit Wikimedia Commons

Toronto, in his piece in The Conversation, the research of Nishanth Tharayil and Mioko Tamura, from Clemson University, shows that the plants choked out by the kudzu tend to lock more carbon into the soil."

"The study, published in New Phytologist, showed that despite a 22 per cent increase in soil litter (due to the abundant leaves the kudzu drops during winter), there was a 28 per cent decrease in soil carbon after a kudzu infestation invades an area."

"According to a Clemson University press release, Tharayil said: "Our findings highlight the capacity of invasive plants to effect climate change by destabilizing the carbon pool in soil and shows that invasive plants can have profound influence on our understanding to manage land in a way that mitigates carbon emissions.""

Flowering kudzu credit Wikimedia
Commons

We watched in stunned helplessness as Autism Speaks, like kudzu, invasively entered our lives and propagated gigantic, noxious campaigns that spread vapors of ablest humiliation, hopelessness, and resentment sprinkled with the occasional seasoning of inspiration pornography around the world. Their misguided doomsday scenario of fundraising by fear of an autism epidemic oppresses supporters to relieve that sense of helplessness by raising money to aid it in spreading its depressive rhetoric. Local autism nonprofits directly helping autistic adults, children, and families saw funds being choked off as Autism Speaks launched massive media campaigns to generate new fundraising revenue streams of tens of thousands of dollars towards odd research efforts (read about why Alison Singer resigned from Autism Speaks here) each year.

As kudzu spread north, killing every native plant in its path, Autism Speaks expanded into legislative efforts and advocacy, with all the finesse of a bull in a china shop, upending or appropriating efforts by informed legislative activists and organizations not in lockstep with them while trying to mandate its own singular, damaging agenda.  Autism Speaks spoke about autistics while choking out their voices. It claimed it spoke in the name of all autism parents while demanding all parents accept their idea of what autism does to families and what autism policy should be. It has spent recent years trying to obliterate any other advocating voice for autism by such misadventures as:

• attempting to come to Washington D.C. and mandate their singular biased opinion of a national autism policy all the while ignoring disabled disability rights activists and all other autism and disability nonprofits. (This effort continues.); 
•  targeted releasing of another apocalyptic "autism the epidemic" PSA (Sounding the Alarm) and massively pitching and screening it privately, along with sprinkles of funding, to various schools of public health and health care facilities in order to add professional legitimacy to their private autism agenda; 
• that disturbing genome database campaign in collaboration with Google  named and hashtagged "MSSNG" meaning "missing", implying their view that a puzzle piece is missing from our children's brains and bringing to mind disturbing and dangerous eugenic practices of the past that began with attempts to prove that any divergent population was less than another genetically
•  going as far as traveling to self-promote and attempt to control the autism conversation in Catholic countries by marketing their organization to the Vatican complete with founding member Suzanne Wright's unfortunate statement that families look upon their autistic loved ones as St. Francis looked upon someone with Hansen's disease. 

When autistic activists, who remember their lives as neurodivergent children in a world of refrigerator mom treatments, Lovaas punishments as therapy, shock treatments, institutionalization, and unspeakable harm, raise their voices in protest, Autism Speaks unleashes their supporters to bully and insult these justifiably angry advocates. It is a sad spectacle to witness.

Parents attacking autistic adults is in a very real sense akin to those parents attacking adult versions of their own autistic children.  Their inability to see that in their frenzied passion to attack (in the name of a mega nonprofit that uses legal power and corporate might to defend itself with impunity) they are damning the only people who know firsthand what the futures of their own children will hold and are fighting like hell to ensure better futures for autistic children is sadder still. Would they want some stranger to attack their children as viciously as they are attacking autistic adults under the cover of social media? It is heartbreaking to see this degree of hostility and compartmentalization in Autism Speaks supporters. Aren't we all also parents? Aren't we supposed to have the maturity and control our online behavior? Melting down on social media over a hashtag trouncing is not the solution to what is happening. Asking why #AutismSpeaks10 is viewed with such enmity by adults who are truly like our children because they share their neurology might be a better place to start.

Mu, autistic, out and about representing Charm City
On Purple day. Purple has become the only shade of
blue we endorse. Please note the absence of the puzzle
piece. ©Kerima Çevik

Our family never recovered from the shock of seeing Autism Speaks' "Autism Every Day" PSA, which is still branded with its logo and available for viewing on YouTube. We never viewed our son in this manner and it upset us greatly to have autism-parents presented in this way. Having learned our lesson about the depressive effect that Autism Speaks can have on us, we now set a blistering schedule well ahead of time for the month of April to avoid the media bombardment of Jerry Lewis telethon style content that leaves us dispirited every Autism month. Shopping for school supplies, groceries, and a host of other things is a challenge during the month of April. Kudzu, I mean Autism Speaks, and their pervasive puzzle piece logo, meant to represent a piece missing from our children's brains? Or the unsolvable "mystery" of autism, or something? is in our faces. Tenth-anniversary celebrations will only make their annual month-long assault worse.

Autism Speaks came into our lives like kudzu, destroying and divisive to those it presents itself as being in the service of. The good news is kudzu is edible. And if the right species are planted to counter it, things like soy, peanuts, and peas, those plants will give back to the soil and allow native plant life to grow back.

kudzu starch cake,katori-city, Japan ©Katorisi Wikimedia

So how can we fight the kudzu spreading in autism land?

By continuing to insist that Autism Speaks stop inciting panic and hopelessness to control the autism conversation and raise money. It is WRONG. Speaking out even if they use their massive media control to counter. Continue to inform people about what Autism Speaks does and why it is wrong.

Continue to insist Autism Speaks include autistic representation. Autism Speaks needs meaningful autistic decision-making representation. This means either a collaborative working partnership on equal terms with autistic-run organizations that have equal representation in deciding autism policy and issues that have a lifetime impact on autistic children and adults, equal representation on the board of directors, or both. The composition of its board makes Autism Speaks appear to speak for wealthy, cisgender, white, parents, grandparents, and professionals who have autistic loved ones.

Don't allow Autism Speaks to continue efforts to mandate national Autism Policy as they see fit while excluding all other stakeholders: Autism Speaks must stop insisting on forcibly attempting to promote their own agenda by mandating autism policy alone. Autism policy, whether they like it or not, must be inclusive of all stakeholders including autistic voices and the voices of other organizations who represent autistic people and their families and care providers. This is not a corporate takeover. This is a cause and human lives are in the balance.

Reclaim Autism Month: Autism month should not be the personal fundraising self-gratifying palooza of Autism Speaks. It should be a time when the full scope of what autism is, as well as how autistic people have always been part and parcel of our society should be on display. It should be a month for understanding, educating, and beyond awareness, it should be a time for demonstrations of acceptance, positivity, and hope.

So please Autism Speaks, do not obliterate other voices with the ritual explosion of 10th-anniversary chest pounding. We get it. You've leveraged a fundraising model that worked for Susan Komen for years. You're flush with funding and more is never enough. That doesn't give you the right to smash the voices of those you claim to speak for and torture them with loud, sensory overloading, displays of power that are dangerous to autistics. Tenth anniversary or not, for the safety of the autistics you claim to serve, tone down the over-the-top antics a bit this year.

My wish for #AutismSpeaks10 is that Autism Speaks makes a conscious decision to cease being the kudzu of the autism community and act to reinvent themselves into what they should be, a nonprofit that has true autistic representation and allows autistic voices, including those criticizing them, to speak their minds without being the victims of personal verbal attacks and abusive rhetoric by overzealous supporters. We could suspend reality for just a moment more and pretend that Autism Speaks lived with us in the United States and understood that autistic people and families who aren't Autism Speaks members, volunteers, or supporters, like all other stakeholders, had the constitutional right to speak their minds about policies and practices that directly impact their futures.

Further, we could push this make-believe scenario and consider that if all autism organizations looked for points of policy everyone agreed on, worked on a summit that united these points into an autism policy plan acceptable to everyone, then everyone would successfully advocate for said joint autism policy and the acrimonious nature of the autism wars might pause for a cease-fire.

Wars tend to end with ceasefires.

Peace