Nonverbal, Nonspeaking, Autistic Word Navigation

Mustafa Cevik. image of a large, biracial Hispanic presenting
male wearing a sky blue nd white striped
polo shirt sitting in a wheelchair drinking from a water
bottle. Posted with permission from the subject. ©Nuri Cevik

The day I met Lydia X.Z.  Brown, they told me about a gentleman named Michael Forbes Wilcox and the word nonspeaking. Per Mr. Wilcox, most autistic people were incorrectly defined as nonverbal when they were actually nonspeaking.

This is why so many early intervention programs entail depriving autistic children of AAC support while battering them with forcible speech interventions. I guess their logic is there is no apparent physical challenge to producing speech so whatever utterances can be produced should be forced out of the autistic child by any means necessary.

The result adds to the presumption of said autistic child's incompetence because the child may have limited verbal speech ability but much larger AAC supported speech ability.

Thanks to Lydia Brown, I mostly use the term nonspeaking when discussing my son, but his situation is a bit different than most of his autistic peers. My son was diagnosed with damage to an area of his brain related to speech. We were told therefore that he was clinically nonverbal and probably wouldn't be able to speak. At all.

Ever.

 Mu has spoken on occasion in more than one language since that diagnosis and even during the time he was being evaluated. We aren't certain technically how he is able to do it. When it happens I try to act casual. But because when he does speak it is usually related to responding affectionately to either his father his sister or me, I am inevitably overcome with emotion. Just after such a moment, I  quietly remove myself from the room so he doesn't misunderstand and burst into tears of joy.

His voice, as he has entered puberty, is deeper, richer, and more beautiful now.

We were outside yesterday and kids ran by screeching as they played. It disturbed him. It is only on these occasions that I realize how big and different he is from others his age who do use verbal speech freely.

It seems to me, other fourteen-year-olds, talk too much.

His rare affectionate utterances have greater worth to me than the shrieking profanities and loudly whispered ableist slurs of his teenage peers dressed in what they consider their best adolescent finery.

Yesterday I realized again quite clearly that Mustafa, nonspeaking, is a better man than all the howling herd of fourteen-year-olds stomping about trying to figure out who they are by hurling insults at my silent, disabled son.

I love him. As he is. If he never utters a word again. We will continue to stand together, with him leaning on me when he needs physical support, and face the angry ableist racist mob. He doesn't need to speak. Unlike fourteen-year-olds, I know the value of well-placed words in defense of my son's right to navigate the same spaces as they do.

Autism Month should exist to educate those people. It does not. It makes them pity or resent my son and neither he nor I abide that attitude either. They should be taught that words are capital and each moment they spew the wrong ones in misunderstanding, fear, and hatred they bankrupt their own souls. This doesn't diminish my son, no matter how different he may appear to them. Different is not less. It is simply different. Disability and race are the only areas in which difference is not considered rare and precious.

Meanwhile, back at our house, a single word uttered by my son at the right time has the power to bring his jaded old Afro-Latina mother to tears.

Word.


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Resources

Educate yourselves at Lydia X.Z. Brown's blog:
http://www.autistichoya.com/

More on The Language of Autism by Michael Forbes Wilcox:
http://www.mfw.us/blog/2017/02/27/the-language-of-autism-special-interest-as-a-stigmatizing-phrase/

Autism Research Battle Fatigue

Mu with iPad AAC ©Kerima Çevik

It begins every February. Just after Valentine's Day, the build up of hype to Autism Month kicks off with the media blasting "breakthroughs" "new research" "new hope" for autism. We grit our teeth and manage to get through it, but the latest "breakthrough" got on my husband's last nerve. He was really angry and so was I because the pattern is an infinite loop that paves the highway to nowhere that helps our son.

It goes like this: Some minor thing is hyped in the press as if it is a medical miracle, followed by a small bit of news that changes nothing and does nothing to help our 14-year-old nonspeaking autistic son with his AAC needs, his education, his healthcare challenges or his community supports. Here's how the BIG AUTISM NEWS was headlined:

Study: Detecting Autism May Be Possible Earlier in Child's Life 

But early detection doesn't help diagnosed autistics over the age of four at all. The average lifespan of an autistic person is 16 years less than the lifespan of anyone else according to a Swedish study. Inevitably, research always focuses on birth and early intervention, then ignores the entire life that already diagnosed autistics have to live after those first four years.

Here is what the headline should have read:

Brain Scans Detect Signs of Autism in So called 'High-Risk Babies'(i.e., siblings of autistic children) Before 1st Birthday

Here is what this study, which must be replicated in order to base any sort of planning or policy on it, actually says in brief, plain language:
If a family has one autistic child and they have an infant, and that infant has a bigger brain, then that infant has an 80% chance of being autistic. Bigger brains can be checked for by MRI scans on sleeping infants.

That is it.

Whenever I hear about new research, I go to Scientific American or the peer-reviewed journal publishing the original research paper. This allows me to see what the research was actually about rather than have to wade my way through hype and skewing of research results for attention or ratings. Here's the article on the actual research paper:

https://www.scientificamerican.com/article/autism-starts-months-before-symptoms-appear-study-shows/

Wow. I love millions of dollars in research that states the genetically obvious.

But hey, early detection means early intervention and the chance for 'making' infant siblings of autistics indistinguishable from their peers, right? Because hiding in plain sight is 'good' and means fewer resources and higher demands on children who will still be autistic, but just look and behave as if they aren't. It seems that autism research isn't about supporting autistic people and their families, it is about making society comfortable by hiding those who are autistic among those who are not. Are we now entering the "Autism: Don't ask, don't tell" era?

Tell me, how does this help my son with the accommodations he needs? How does this research aid in his primary challenge, which is being nonverbal? How does this improve his sleep cycle disorder, immune system weakness, gastrointestinal issues? This is not an autism breakthrough. This is an autism research paper in which genetic predisposition for autism was likely and success was almost inevitable.

My husband and I are tired of being perpetually annoyed at the sole emphasis on this type of research and the media's hype of it because funding that should go to improving the lives of our son and his peers is instead being disproportionally poured into detection and DNA testing. Yeah. We actually get our son is autistic. So does he. Aren't all of you tired of this, too?

We don't want research into new and improved chemical restraint in the guise of powerful hypertrophic drugs. We don't want to fund the ambition to create an autism test that works like the Down syndrome test so parents can abort their autistic babies or "CRISPR" the "autism genomes" away. Nope. I don't care how soon they could have diagnosed my son as autistic but did not. What I care about is how to help him become as autonomous as possible and how to ensure he has a safer, more accessible world to live in. I care about him not dying before his time.

We watch million of dollars go into everything but what autistic people need. No needs assessment has been done on what research autistic people and their families need that might help them right now, and each time one of these research puff pieces comes out our exasperation escalates to the point where we are now in full autism research fatigue, and just don't want to hear it. Research claiming to be "for autism" should actually benefit our autistic loved ones, not focus solely on early intervention and early diagnosis. It is past time for autism research to aim for client-centered outcomes with the active inclusion of autistic people and their families beyond use as data sources and genetic material.

We will have two more months of announcements on research "breakthroughs" "new research" and "new hope" "for" autism, not autistic people,

Caveat Emptor, buyer beware autism families. When it comes to autism research rolled out from February to April's fundraising month for autism, ask yourselves how it benefits your autistic loved one. The truth is, we are the ones asked to participate in various events to raise funding for autism research. Think about where that money will go and make your voices heard for autism research that benefits and improves the quality of life for your autistic loved ones and increases their lifespan. Then speak out and do what is necessary to drive funding to that research.

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References
On New Autism Research
Scientific American 
Autism Starts Months before Symptoms Appear, Study Shows
Flagging children early offers the possibility of more effective treatmenthttps://www.scientificamerican.com/article/autism-starts-months-before-symptoms-appear-study-shows/
NBC News
Study: Detecting Autism May Be Possible Earlier in Child's Life http://www.nbcnews.com/nightly-news/video/study-detecting-autism-may-be-possible-earlier-in-child-s-life-878228035632
On the Shortened Lifespan of Autistic People 
Independent
Why do many autistic people die before the age of 40? http://www.independent.co.uk/life-style/health-and-families/health-news/autism-why-do-many-autistic-people-die-before-the-age-of-40-a6937911.html
On CRISPR and Targeted Genome Editing
New England BioLabs
CRISPR/Cas9 and Targeted Genome Editing: A New Era in Molecular Biology
https://www.neb.com/tools-and-resources/feature-articles/crispr-cas9-and-targeted-genome-editing-a-new-era-in-molecular-biology

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