AutisticWhileBlack #BlackHistory2021: Vaccination While Black

The author, owning
The angry Black woman 
look. Image of a gray haired 
Black woman with glasses. 

The huge disparities between the agendas of those individuals with the largest platforms who are presented as allies to autism advocacy and the realities of what African American autistic families need to survive have continued for all the years since my son's diagnosis. I try to highlight and speak out, but my voice is tiny. But I am fed up and I'm going to vent now.

Steve Silberman, the author of  NeuroTribes, posted this on social media:

Steve Silberman: Vaccine envy is a thing.

I have been trying for months to emphasize the struggles and barriers to our communities of color, particularly my racial peers, having access to vaccination. I have been trying to show the incredible irony between the near gaslighting being done to push vaccination on our people when there is no supply of vaccines to give us. The cruelty of advertising mass vaccination events as "open to the public" at sites that require individuals to have cars when those most vulnerable don't own cars and no public transportation is provided to those sites. In truth, only those who have managed to gain appointments, which require access to the Internet (needs class privilege and access to technology) are allowed at mass vaccination sites, and there can be no mass vaccination without vaccine supply.

Being Black in America during a pandemic means the quality of healthcare given is limited because the staff, equipment, and treatment options that those with race and class privilege have are not available in their zip codes. Add racialized autism to these obstacles, and the idea of achieving vaccination becomes a nearly impossible mountain of barriers to climb.

Black vaccine hesitancy is discussed in the press and narrowed to one incident when the history of disparity in health services and maltreatment of African Americans continues to this day. Only Rachel Maddow has spoken to our own people trying to breach barriers to vaccinate us. 

I tweeted about Drene Keyes going into anaphylaxis minutes after being given the first Pfizer vaccine dose. I am angry that the same excuses for why more of our people are dying from COVID 19 are being used to excuse her death. Her preexisting conditions. This is not the first anaphylaxis reaction to this vaccine. Others have had this reaction so this was a known issue. Why then, was this not thought through before giving the okay for a disabled woman to receive this vaccine? Why is our community not asking these questions? Because the quality of healthcare for the non-racialized disabled population is better than for us.

My son and I are disabled. No one has bothered to care whether disabled people might die from anaphylaxis after a dose of a vaccine. No authorities have taken the time and care to warn African American patients, a majority of whom have preexisting conditions and low access to quality healthcare services, to wait before getting vaccinated. Instead what we hear, from supposed allies, is pressure to forget the disparities in healthcare that are driving up the numbers of us who die from this coronavirus. We hear that it is a lack of education causing vaccine hesitancy, while hospitals that serve our most impoverished communities demand equipment, medical supplies, and staff to fight the surge in infected patients. Entire families are dying. Our people are pressured to sign up for vaccination appointments when they have no access to the means of signing up. We are told to drive to vaccination sites without a car. We are told to stay at home when our jobs require delivering food, medication, and care to those who can stay in homes without risking eviction for not being able to pay rent. We are told to go to mass vaccination events when there is no vaccine supply. 

I want everyone claiming to advocate for autistics and their families to do better. It's time to advocate now by giving us the damn mike since mainstream autism advocacy is clearly ignorant of what has been happening to our community since the beginning of this pandemic. Reach out to your communities and do something to save lives and make this vaccination effort equitable for everyone. We are dying while our supposed allies are posting quips on social media.

When will those who are supposed to be our allies cease making thoughtless, clueless, cruel statements like "vaccine envy is a thing?"

If this is the mainstream idea of allies, miss me with that.

Rant, done.

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 Month Essays: Against The Presumption of Incompetence

Mu in a green hoodie in his favorite spot, debating whether or
not to visit the wild ducks in the pond. Posted as always with
the permission of the subject. © Kerima Cevik

When parenting both our children, my husband and I tried to make certain they knew exactly who they were and hoped they eventually understood that the labels they carried were things they could take ownership of and apply to help them navigate their lives more effectively. 

Our daughter has a clear idea of the entire scope of her multiracial and multicultural identity. Our multiracial, multicultural, nonspeaking autistic son is 15. I have tried my best to ensure he knows his heritage despite communication challenges. I have found other ways of showing him who he is; of indicating to him it is okay to be who he is and that we are proud that he is our son as he is. We want him to know we will be doing our best to support his efforts to live an autonomous life, and such a life must begin with an acceptance of his entire identity.

My son likes to watch Disney World travel infomercials on YouTube. One day he came into the office I share with him to show me a video. The video was a Disney Parks episode where parents were describing what the Disney experience was like with their daughter, who carried an ID/DD (Intellectual Disability/Developmental Disability) label. At the point where she described her daughter as having a developmental disability, my son stopped the video and put my hand on the child's image and then placed my hand on his head. I shook my head yes in response. I said "Yes, son. You are like her. She has a diagnosis of Down Syndrome. You are Autistic."  He hugged me and left the room. I stared after him, an emotional mess, stunned with surprise, shock, sadness, and relief, unknowingly shedding silent tears of pride. 

Knowing ourselves and understanding where we are similar and different from others is a life-altering affirmation of one's competence. My son arrived at this understanding and communicated his suspicions to me without uttering a word.Grasping the scope of one's disability is a giant step in self-advocacy.

 To some degree, everyone needs certain labels. They form the framework of how we begin to define ourselves. But many labels are not positive or even accurate ones, and sometimes they are forced upon us. In fact it may not be the label itself but how we ascribe meaning to it in everyday usage that may devastate. Some labels carry the baggage of bigotry. 

Many parents who impose the goal of becoming indistinguishable from their typical peers on their autistic children feel the idea of acknowledging that their child may carry an ID/DD label is an abhorrent barrier to normalizing them. Additionally, some schools abuse the power to label a child ID/DD on IEP documents because they want to segregate the child from typical peers when said child might do better with supports in an inclusive classroom. The results of either of these circumstances are some devastating potential outcomes to the autistic student that parents and professionals don't spend enough time considering when making arbitrary decisions for or against the use of the ID/DD label. 

I began thinking about how many autistic students were labeled ID/DD and how they came to terms with that label a great deal after my son came to me to question his own identity in gestural language. I was trying to catch up on my friends' status posts on Facebook when I read an entire thread that brought the entire question of the ID/DD label into sharp, painful focus. It was about a family being pressured by an IEP team to add an ID label to their child's disability designations. Several people who were academics, educators, activists and autistic advocates who carried the twice exceptional label were tagged to give their input on the advantages and disadvantages of accepting such a label. I was not one of those tagged.

My son carries the ID/DD label, not by choice but because that is his medical reality. If there is pressure on any family in a school setting to add this label, they need to understand that whatever they decide potentially changes the entire quality of their child's educational future, and this is not always a positive change. The aversion and abhorrence that people who should know better displayed when discussing accepting this label truly disturbed me.

 I'll try to explain why.

I came into this world with dark skin. I am no more able to hide or deny this identity than my son is able to hide or deny his ID label. Yes,  the ID label comes with a heavy burden to fight society's lifelong presumption of incompetence. There was a time when African American labels came with the presumption of incompetence as well as the false accusation that the amount of melanin in one's skin determined who was more intelligent. We dark-skinned people continue to fight these stereotypes. 

Being an African American woman carries lifelong challenges and injustices with it that made me more aware of ableism directed at my son. Despite the hardship, we now know that a clear grasp of a person's identity can give them self-respect that hiding it in shame cannot. The idea that because of these hardships, an identity is something that can be opted out of is wrong. What needed to be said in this thread that wasn't was does this child have a full professional diagnosis? Does that diagnosis include an ID label? If it does, then depriving them of the support they need by hiding this is like leaving a wheelchair user's chair at their departure airport. 

I thought it was our job to right the wrong of institutionalized presumptions of incompetence. That bit of ableism is the fundamental rock in the wall of segregation from every opportunity that keeps our loved ones from their rightful place in our society. History shows clearly that presuming anyone incompetent begins an othering of groups that slides into catastrophic abuses and oppression. There was an air of defeatism in this thread asking whether or not to allow the ID label on a child's educational record that brought me down. Our loved ones will always feel they are less than others if we simply accept the wrong-headed belief that giving a person an ID/DD label equals a lessening of their personhood.

I just don't know when we will get past the idea that if a person cannot speak or learn in the way the average person can, they are less than others in society. We tend to blame our student's disabilities for our societal failure to meet their educational needs when the truth is we have not changed the fundamentals of the way we educate our children since the industrial revolution. Why aren't we fighting to rethink and redesign learning to reach ID/DD students' needs and learning potentials? We simply passively accept things as they are. And each year, our offspring are given less support and less access to learning particularly when they are made to wear that label.

The largest issues I have about parental fear of the ID label and the presumption of incompetence is that if we do not fight the baggage forced on our loved ones with their neurological identity. How can we teach them allow them to carry this label with pride unless we can let our children know with sincerity that ID/DD labels are nothing to be ashamed of?

I wonder if this defeatist attitude contributes to depression and anxiety in our loved ones? I also worry  that denying knowledge about a critical aspect of a student's disability enables the potential devastation to the mental health of the student not aware of why they may have challenges in areas where their peers are succeeding, I wonder how much trying to opt out of ID/DD labels inadvertently slows progress creating educational methods that may maximize our students' potential because distaste for the ID/DD perpetuates our society's  presumption of incompetence. 

It is our responsibility to make our children matter by fully understanding what accepting the ID/DD label means. They can't accept themselves if we are afraid to say whoever they are, whatever their disability constellation entails, we accept them. Believe me, our offspring feel our shame and insincerity and internalize it.

We parents passionately demand better schools, better IEPs, and an end to the use of the r-word. I am thinking that we also need to take a hard look at our own attitudes and make an active effort to change them so our offspring can sense that shift organically and not internalize any subliminal ableism about the labels used to identify their neurology. 

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

Facebook Notes Series: My Standing Position on Facilitated Communication

Originally Posted on author's Facebook Page, April 21, 2014

Facilitated Communication, or FC, is the memorial whipping post of autism. An easy target to malign because fraud is always big news; many who do so are not aware that they are falling into an ableist point of view because said criticism is founded on the presumption of the incompetence of the user of this method as AAC support.

My issue with FC criticism is that medical malpractice is more frequent and widespread than FC fraud, but we don't discredit modern medicine, and we don't tell people not to seek medical help. Psychiatric fraud and malpractice are more widespread, but we don't discredit the practice of psychiatry. In fact one of the most devastating chapters in autism history was Bruno Bettelheim and the entire psychiatric community insisting on legitimizing his dissemination of the unfounded "refrigerator mom" theory of autism ( "although [ Leo] Kanner was instrumental in framing the refrigerator mother theory, it was Bruno Bettelheim, a University of Chicago professor and child development specialist, who facilitated its widespread acceptance both by the public and by the experts in the medical establishment in the 1950s and 1960s." - Wikipedia).  An entire generation of mothers and their autistic children were irreparably harmed, all from a concept that was horrific, because the psychiatric community was not held to account for what the man was doing simply because of his professional label.

Cases of FC fraud should prompt the kind of response fraud in any other human services area does; that is a call for stringent standards and vetting for facilitators. It should not (based upon the presumption of incompetence of the nonspeaking participant, which isableist) be thrown out. Situations like these are why the cliche "throwing the baby out with the bath water" was created. Articles critiquing FC  facilitators should be doing just that. Not attacking the method, but shedding light on how important it is that standards be set for those facilitating, just as standards are set for quality of all those assisting and providing support to individuals in our community.

So:

1. Presume competence of nonspeaking autistic individuals. Sue Rubin, Jamie Burke, Amy Sequenzia , Sharisa Kochmeister and countless others show us that the ultimate goal of assisted typing can be achieved though reaching that goal may take years.

2. Critique the fraud by all means but realize that malpractice and fraud are rampant and this should never prevent a method from being explored or applied. Celebrate the successes of this type of AAC as well.

3. Call for better quality standards in managing those who are trained to facilitate. Because the consumer is a nonspeaking one, it is important that strong self advocacy skills be established in the consumer as well. Be part of a solution. Improve the lives of nonspeaking people, don't take away the legitimacy of their speech support and marginalize them. There is a great deal of room on this giant ship of autism. Let's let everyone get onboard.

This post generated 56 shares and 87 comments. I will try to add some of the comments which were posted references below.

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http://tinygracenotes.blogspot.com/2012/12/i-was-self-loathing-fc-skeptic.html
http://emmashopebook.com/2014/03/28/seeing-others-write-to-communicate/
http://tinygracenotes.blogspot.com/2013/07/dealing-with-family-matters-of-constant.html

American Speech-Language-Hearing Association. (1994). Facilitated communication [Technical Report]. Available from www.asha.org/policy. http://www.asha.org/docs/html/TR1994-00139.html#AP2 [Particularly important are The Final Recommendations: http://www.asha.org/docs/html/TR1994-00139.html#sec1.12 and Appendix 2: Minority Statement to Technical Report on Facilitated Communication and Response from Subcommittee Chair http://www.asha.org/docs/html/TR1994-00139.html#AP2] Accessed 25 April 2013.

Bailey, Judy, 2006, Dealing with Silence and Coming Out of Silence, http://www.everyonecommunicates.org/.../ComingOutOfSilenc..., Accessed 30 April 2013

Bailey, Judy, 2007, Slides from a Presentation given by Judy C. Bailey, M.Ed.,at Ellensburg, Washington, Summer 2007, http://www.everyonecommunicates.org/.../Ellensburg2007.html, Accessed 30 April 2013  http://www.everyonecommunicates.org/nutshell.html

Bailey, Judy, 2005, Thoughts on Facilitated Communication Training (FCT): What If…?, http://www.everyonecommunicates.org/.../ThoughtsOnFCT.html, Accessed 30 April 2013

Brandl, Charlene, Sometimes It Can Be Hard to Believe, Grandma Char and lessons learned, 25 March 2013, http://www.grandmacharslessonslearned.blogspot.co.uk/..., Accessed 17 April 2013.

Brandl, Charlene, Why I Do What I Do, Grandma Char and lessons learned, 11 January 2013, http://www.grandmacharslessonslearned.blogspot.co.uk/..., Accessed 17 April 2013

Crossley, Rosemary, Issues of Influence: Some Concerns and Suggestions, Facilitated Communication Digest, Vol.1 No.3 (May 1993) [pp 11-12], reprinted at Institute on Communication and Inclusion, Syraceuse University http://soe.syr.edu/.../doc.../2011/8/Issues_of_Influence.pdf Accessed 23 April 2013.

Crossley, Rosemary, Literacy and Facilitated Communication Training, Facilitated Communication Digest, Vol.1 No.2 (Feb 1993) [pp 12-13], reprinted at Institute on Communication and Inclusion, Syraceuse University http://soeweb.syr.edu/.../Literacy_and_Facilitated... Accessed 23 April 2013.

Crossley, Rosemary & Borthwick, Chris. 2002, "What Constitutes Evidence?" Presented at the Seventh Biennial ISAAC (International Society for Alternative and Augmentative Communication) Research Symposium, Odense, Denmark, 2002, https://attachment.fbsbx.com/file_download.php... Accessed 24 April 2013.
Fransden, Mike, Examiner Health & Fitness, 9 October 2010, Facilitated Communication (FC) enables non-verbal people on autism spectrum to communicate by typing, http://www.examiner.com/.../facilitated-communication-fc..., Accessed 16 April 2013.

ASHA Practice Policy - Browse by Topic
Below are the official documents of the Association related to a particular topic. You can also browse documents by year and by type of document.
ASHA.ORG

Jasuta, Stephanie Sherbel, Speaking Up for People Who Can't Speak, Blogging Authors, Guest Post, http://www.bloggingauthors.com/.../speaking-up-for-people..., accessed 16 April 2013.

Tuzzi A. (2009). Grammar and Lexicon in Individuals With Autism: A Quantitative Analysis of a Large Italian Corpus, Intellectual and Developmental Disabilities, 47(5), 373-385.http://soe.syr.edu/.../2012/4/__Public_Lecture_SLIDES.pdf, Accessed 16 April 2013. (In English).

Wilkens, John, 'Nothings need to be heard', email Interview with Diane Goddard, Peyton's Mum, U-T San Diego, 29 March 2013, http://www.utsandiego.com/.../memoir-traces-familys.../... Accessed 16 April 2013

Williams, Donna, In the Real World, Printed in Vol. 3 No.2 (Feb 1995) of The Facilitated Communication Digest [pp5-9], Reprinted at Institute on Communication & Inclusion, Syraceuse University, http://soe.syr.edu/.../2010/7/in_the_real_worldwilliams.pdf Accessed 23 April 2013

Zurcher, Ariane, More About Facilitated Communication, Emma's Hope Book, 15 February 2013, http://emmashopebook.com/.../more-about-facilitated.../ Accessed 22 April 2013

Zurcher, Ariane, Is Facilitated Communication a Valid Form of Communication?, Emma's Hope Book, 16 November 2012, http://emmashopebook.com/.../is-facilitated.../ Accessed 22 April 2013

Zurcher, Ariane, An Unexpected Response and The Importance of Trust, Emma's Hope Book, 10 December 2012, http://emmashopebook.com/.../an-unexpected-response-and.../ Accessed 23 April 2013

Zurcher, Ariane, What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism, Thinking Person's Guide to Autism, 8 April 2013, http://www.thinkingautismguide.com/.../what-i-wish-id... Accessed 24 April 2013 

Sharisa Joy Kochmeister et al, The Voices and Choices of Autism - An Insider View, Volume 1, Issue 1 [pp 1-121]: June, 2009, http://pekdadvocacy.com/.../TheVoicesAndChoicesOfAutism.pdf Accessed 23 April 2013

http://www.thinkingautismguide.com/2012/11/interview-amy-sequenzia-on-facilitated.html

http://faithhopeloveautism.blogspot.com/2014/03/fc-full-circle.html

http://www.annemcdonaldcentre.org.au/anne-proving-i-exist

Disparity in Health Care: Malpractice, Euthanasia, and 60 Minutes' "Breeding Out Disease" Episode

My son is convalescing. He was very ill, he was in pain, and I was in an agony of grief. So heartbroken that my heart reacted and that sudden shortness of breath, that nausea, and the sharp chest pain that doubled me over happened.  I fought to collect myself, quickly, medicate, and be there for my son. I could not end up in a hospital as well.

Image is of Mu at a much younger age asleep in another ER hospital bed

It is the worst part of being a parent. The helplessness. The horror of watching your child suffer. For parents of disabled children, a large part of our lives are spent in hospitals. Our children, throughout their lives, have medical challenges that require we buck up and stand by them. I would bear my son's pain for him if that were possible. But he has a will to live that is more powerful than almost anyone I've met in my life. He's a fighter. So when these health crises happen and he's in that ER room bed, smiling weakly at me I smile back and say quietly " let's kick some ass son". He and I fight the power. He doesn't need to say a word. I see his will to live in his eyes, and in his quiet focus on silently managing the pain. It does not become me to fall apart in the face of such courage. Since I was given the honor of calling myself the mother of such a son I must join my will to his and show him I am with him. I must help overcome every obstacle with him and stand firm. That is the job.

I know that in global disability news, the current hot button topic is Charlotte Fitzmaurice, the UK mom who, along with her husband and the hospital caring for her daughter, Nancy Fitzmaurice, successfully won a lawsuit to end Nancy's life by starving her to death. When one removes a feeding tube from an individual who is unable to receive nourishment any other way they are starved to death. I'm sorry how is that humane? So many care providing people have starved their disabled children and adult siblings to death. It is a painful, horrid way to die. Those who did where sent to prison for it. How is it that a hospital setting and court order make this okay? We are going to inflict further terrible pain on this child because we want to free her from pain. WTH?

Something else that really bothered me about the way this story played out was a very critical point that no one spoke out about. London's Great Ormond Street Hospital was responsible for Nancy's round the clock care. A botched a routine operation left 12 year old Nancy screaming in agony. Then Great Ormond Street used their resources in a legal battle in the parents' names to end Nancy's life by removing her life support systems and nutrition. No one is asking the right question. Why would a hospital do this? Who was responsible for the botched surgery that brought Nancy to this point? Why were they not held to account for it?

I pray our son is never a victim of medical malpractice going forward. I believe if such a catastrophe occurred and we were offered this option of hospital endorsed legally approved starvation as some optional remedy for any harm done him I would listen for the Twilight Zone music in the background. This idea of ending the suffering of someone who can't tell you what they want and doing it so horrifically is freaking me out. Especially now, with Mu fresh out of the hospital.

He is my almost 12 year old, my youngest, and he is still recovering from being very ill. These health episodes terrify me, because in those moments his life depends on the professionalism of the medical institutions responsible for his care. Those people may decide his life is not worth fighting to for. His life has to mean just as much as the life of someone his age who has verbal speech and and ordinary brain. It cannot mean less because he is disabled. He is not less. He is our son. I want every effort made to help him be as healthy as possible. His divergent neurology should not be factored into the quality of his medical care and when medical institutions become involved in deciding whether or not to continue life support and nutrition for disabled children my son's age the world takes on a nightmare quality that doesn't require Halloween costuming and creepy music.

The tragedy of Nancy Fitzmaurice's death was compounded by Sunday's 60 Minutes broadcast entitled "Breeding Out Disease", presenting the idea that wealthy people are now able to pay to have their DNA scrubbed clean of pesky undesired cancers and things and then have perfect, made to order, babies. It jacked that creepiness up to haunted house on steroids levels. So much like the Hitler youth program. Or Star Treks' Wrath of Khan "we are superior because we are genetically engineered to be so" tripe.  Just who defines what we "breed out". Oh and the patent for this was acquired by a doctor who will charge a crap ton of cash to do what is necessary to provide this service. There are so many ethics concerns here. So much can go wrong it would take a series of blog posts to explain.

Meanwhile, my boy is recovering from being ill. We went to the ER and they understood him. They didn't force the blood pressure sleeve on him, they asked him. When discussing how he was, they spoke directly to him, even when he did not respond. Then they spoke to us and when we were done they tried their best to explain to him what they needed to do. Each person said goodbye to him and shook his hand. The doctor remembered another ER visit long ago, when Mu was much younger and remarked to him that it was nice to see him giving his mother a hug to calm her down. They treated him like a human being whose life mattered. I don't know that we will hit the kind humane hospital staff lottery again. It is chance after all. Ableism does not ask permission to infest your life.

 Two points of human rights violations in the ghastly euthanasia issue are the questions around consent without outside pressure when the patient is disabled or cannot indicate consent, and the idea that most of what is labeled mercy killing of late is killing, with pain and horribly, then the perpetrator using the victim's disability as an excuse to say "it was an act of mercy" afterwards. Imagine a policeman shooting a Black teen and saying "It was a mercy killing." "I did it because I knew he would live in pain and poverty all his life, and I wanted to spare him." Now replace Black with disabled.

When we are all arguing about these topics, I hope we remember that the person whose life was decided without her say was Nancy Fitzmaurice. She was 12 years old. She was the victim of a routine surgery that was botched and resulted in her suffering greatly. This suffering was not a result of her disability. It was the result of medical malpractice. This hospital has taken a large step into fright night going to court for parents in order to justify depriving a patient of nourishment until she died of starvation.

Lastly, rich folk trying to pay some dude to "scrub" their DNA of cancer, disabilities and such? Yeah. I don't see that ending well. We are talking about the same professional community that botched a routine surgery and then decided the fix was starving the patient, a child, to death.

Happy Halloween my people. No need to walk the dead. Fear is here. Hug your loved ones a bit tighter this week.

Why Autism Training for Law Enforcement Doesn't Work

Add A black T-shirt with white lettering on the front that reads:
[This Ain’t / Yo Mama’s / Civil Rights / Movement].
The sleeves and bottom edge of fabric have been cut off.
The back of the shirt has white lettering that reads:
[Hands Up United]. Collection of the Smithsonian
 National Museum of African American History
 and Culture, Gift of Rahiel Tesfamariam

In the aftermath of events in Ferguson, many Black autism moms are giving voice to their fears for their sons. NPR published an article about the Autism Society of Los Angeles teaming with the Los Angeles police department sponsoring a training seminar organized by autism mother and special education teacher Emily Iland for autistics, to teach them about dealing with Law enforcement and to familiarize law enforcement officers with autism and also aired it on a broadcast which you can reach here.    

Now I need to explain that the Denver police officer who shot 15-year-old Black autistic teen Paul Childs III,  had not only received autism training but knew Paul personally and had returned him home just a few days before when Paul had experienced a severe seizure and wandered off, disoriented. Paul trusted the police officer who shot him to death in front of his mother.

Stephon Watts was shot by a Calumet City police officer who had also received autism training. The police officer had arrived at the scene with his partner and ample backup knew Stephon and was fully aware that Stephon was not a threat. The officer who shot Stephon Watts, his partner and other officers on the scene also had tasers. No one bothered to use them. So much for autism training. I learned this painful lesson firsthand when despite my efforts in first responder training in Maryland, Robert "Ethan" Saylor, a young man with Down Syndrome was killed by off duty policemen refusing to listen when told he had a behavioral protocol in place and his mother was on the way. Only after this death did people take this issue seriously. 

Reginald "Neli" Latson was trained in how to manage a police encounter. His behavior was entirely correct. Unfortunately, no one taught Neli how to handle an individual policeman who was off duty and refused to believe Neli was not a threat. In 2013 Neli threatened self-harm because of what was happening to him at the group home where he was to serve out a 20-year sentence and police were called. He is now facing a return to a hellish prison existence, and he doesn't know what he did wrong in the first place. Another awful wrongful call, another disastrous encounter with police, and Neli's life, which was already ruined, is doomed. Out of the media's view, Neli will be returned to an unjustly harsh prison sentence for being autistic and Black. 

No police officers involved in the two deadly shootings lost their jobs. The officer who shot Paul Childs was promoted. 

Unless this type of encounter has happened to you, you will not be able to understand what occurs. Dave Chappelle used such encounters and compared them to police encounters he witnessed between white friends and police in his stand up routines for a reason. Every one of us, nearly all people of color are at risk for this. But we don't have the additional challenge of possibly not being able to speak or behave in a "normal" manner at that moment when speech is being demanded by officers who may or may not have the best intentions towards us.  The Washington Post had a recent blog post that directly asked the question " Why do police see a person's disability as a provocation?"  Training doesn't cover attitudinal injustices. 

So why were Paul Childs and Stephon Watts shot by police who were trained to understand and deal with them knew them personally and had helped them in the past? Why did Neli Latson's "training" fail? Why do I think the Los Angeles approach won't work? First, police in whatever they perceive to be a crisis situation will always fall back on their basic training. So where autism training would require they calm and de-escalate the situation, police will not think in a counterintuitive fashion and they will escalate automatically based upon cues they are trained to react to with aggression in the academy. If they perceive rightly or wrongly that their target is holding anything they will treat the disabled person like a suspect and anyone near them like a hostage. In short, autism training is counterintuitive to police training.

The example given by NPR of the police training seminar for autistic students is typical of parent-driven training. It tries to train autistic consumers on parental and police terms while excluding them from decision-making agency in the creation of the training protocols and curriculum. This demands the autistic person, who may be overwhelmed and in a traumatized state, "behave appropriately" and recognize law enforcement is not a threat. Another issue here is that many autism-related 911 calls are sometimes misplaced or being made for the wrong reasons. These are medical or mental health crisis calls rather than calls for police backup. By misplaced, I mean the intent of the calls is not to help with crisis intervention, but to establish a record needed for other purposes.

Families should no longer be told by anyone that fast-tracking their grown male children into group homes can only happen if there is documented proof that the individual is a danger to himself or others because what follows is parents using 911 calls to establish a paper trail to justify sending their young men off to a group home. These actions often end in tragedy.

You can't train away racism or ableism. Understand that. What we need to look for are paths to reduce creating situations where these encounters take place meaning exploring solutions like a crisis team response group of medical, mental health, and autism professionals which would only include law enforcement (armed with a taser NOT a gun) if abuse of the disabled person or the threat of harm is truly imminent. All strategies need to be inclusive of autistic disability rights activists because they are both directly impacted by whatever training strategies, policies, or actions happen in their name, and they know what training and delivery methods will work best for their peers. 

I ceased pursuing a route of training law enforcement after the death of Robert Ethan Saylor, which happened a year after Maryland implemented the regulatory training solution as an alternative to the bill I asked to be introduced and tried to pass. It was a bitter pill.  I sat in a room full of stakeholders unable to fight back tears the year before, saying that the next time we all met it would be in the aftermath of a death because we had the chance to avert such a disaster in our state and we didn't fight for it enough. I don't know why it takes young people dying to drive legislative change on issues like this. But I realize now that such changes wouldn't have mattered and I was going in the wrong direction with this. We need to understand the hate against the black body, hate against disability, and base solutions that save lives on how to overcome these things. 

My son's life and the lives of too many others depend on us finding a better solution to this issue. Such a solution can only be arrived at by including his neurodivergent peers as stakeholders beyond parading them in training that does not reflect real-life fear in confrontations with law enforcement. Some policeman talking down to a room full of nearly grown neurodivergent men telling them "never touch a policeman's gun" when most autistic men who have been shot dead are shot from a distance not nearly close enough to see a policeman's gun, much less reach for it, shows the canyon divide that exists here. It is time we stop doing things about autistics without them. Stop doing things at them. We can't continue to bury our own sons. 

Peace.