Saturday, April 2, 2016

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 BrainThe 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

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.

Searching for autism blogs: 

Jim Sinclair's Don't Mourn for Us

Concurrent topics in the autism conversation:
Identity First Language:
Jim Sinclair
Lydia Brown at Autistic Hoya's posts are on Identity first are also excellent: 
Prosopagnosia/Facial Agnosia
Unstrange Mind's Sparrow Rose Jones'  excellent post on Non24

Back in the day, on Ari Ne'eman: