Autism, Accommodation for Disability, and Traumatic Normalization

Mu and his adult big sister in front of the Mother and Child statue in downtown Greenbelt when Mu was six years old.
Image of a child in a yellow winter coat and black slacks leaning on a young woman in a green winter jacket and dark jeans
both have their backs to the camera and are facing a giant sculpture of a mother holding a small child. ©Kerima Cevik

I try to stay out of autism parenting arguments in the community. My son doesn't fit the mold of those parenting issues being debated, and such discussions only end with my being furious at the lengths parents go to try and force normalization in their children the way Cinderella's stepmother tried to force a glass slipper that clearly wouldn't fit on Cindy's stepsisters. But sometimes speaking up saves lives and may change things for the better. So I'm going to write about an aspect of autism parenting.

Someone on social media decided to post a question. They asked if it was better to make an autistic child comfortable than to challenge them. The inquirer followed by saying this was a point of heavy debate in the autism community and someone had advised them that it was better to make their child comfortable implying that parent posting the question didn't agree with the idea of comfort over challenge.

The entire question was wrong because it was founded on the idea that normalization of an autistic child, by any means necessary, is the right ultimate goal when curing them is not possible. This ignores the reality that autism is a disability that requires, by law, just as much adaptation, accommodation, inclusion, and support as any physical disability would.

Autism is a lifelong disability. Autism is not "curable" by ABA. Enforced behavioral modification simply masks the outward expression of autistic behavior but can cause residual harm that presents in post-traumatic psychiatric disability. Parents often believe that the surfacing of mental health concerns in their autistic children expressed in anxiety disorders and PTSD are caused by autism when in fact they are part and parcel of a lifetime of no accommodation for their offspring's disability, traumatic enforcement of normalization in the guise of parental and professional "challenge over comfort" attitudinal ableism and treatment-related stressors accumulating over time.

Back to the question. Is it better to make an autistic child comfortable or challenge them?

What the hell does that mean?

Where daily life, care of self, care of the personal environment, and overcoming bars to access and disparities in everything from health services to educational equity are challenges which already exist for nonspeaking autistic youth, creating the "making them comfortable v challenging them" question as some adversarial issue dividing the autism community skews the autism conversation away from the true question.

Mu, in a gray t-shirt and gray shorts, Hispanic presenting
male with curly black hair and light brown skin uses
his AAC device, an iPad with TouchChat HD,
while sitting on our deck. ©Kerima Cevik

Why isn't the question "why hasn't the entire autism stakeholder community met and worked out the problem of how therapeutic support can be given without doing further harm to the autistic consumer, particularly when we now know that at least one generation of autistic adults have been permanently traumatized by how therapies are provided now?

When parents set incorrectly high expectations and later find they can't normalize their offspring to their satisfaction they begin a cycle of frustration based abuse that ends in tragedy.  Autistic disability rights activists discuss their own lifelong traumatic treatment experiences in the hope of sparing today's autistic children the long term damage they must live with because of these attempts to normalize them instead of providing the accommodations and supports needed to improve autonomy. If autistic parents were told their child had a physical disability that required they use assistive technology equipment like a wheelchair or cane, they would not then feel they must challenge their children to move through their environment without a wheelchair or cane. They would instead fight for the best equipment available for their offspring. Fundamental to the rift in the understanding of what autism accommodation, services, assistive tech, and inclusion should look like is this incorrect concept that autistic children must be forced to adapt to everything. This pressure increases the more a child can pass for what is viewed as normal. It increases if a child who might be able to communicate at a much higher level with an assistive technology device can produce single or two-word utterances. The goal with any other nonspeaking population is communication through AAC. With autistic nonspeakers, it is forcing two-word utterances and declaring their incompetence.

It is important not to conflate challenging a child after accommodation for a disability and forcing a child to a parent's view of what a normal person looks like. Forcing normalization is a clear sign that parent does not understand the scope of what encompasses autism as a disability and that is dangerous. Acceptance of disability is not lip service during Autism month where we can say we accept our children while compartmentalizing away the reality that they are disabled. It is critical to grasp that we are parenting disabled people. It is imperative that we be certain our children who can pass for typical are assessed for auditory, sensory, and cognitive processing disorders often missed in diagnosis because the child presents as "high functioning. It is critical to push for assessments that do not exist right now that can measure the same auditory, sensory, and cognitive processing disorders in nonspeaking autistic children and adults. Not knowing if a nonspeaking person processes what is said to them in a typical way is a major bar to any treatment, therapeutic support or communication support they need as disabled clients.

This is not a question of "comfort v challenge." It is a question of supporting decision making, educating your children about the scope of their disability and how to keep their mental health intact by using accommodations and assistive technology to support their processing and navigating a world not built for them. It means allowing coping strategies to remain in place as long as they aren't self-injurious.  It means actively seeking humane solutions to self-injurious behavior. It means when aggression occurs, understanding whether the culprit is something like your offspring being in that eight percent of epilepsy patients reacting to their medications with so-called Keppra raging.  One diligent autism mom tracked her daughter's rages and realized over time that the culprit was environmental and in fact an additive in McDonald;s fries. Once the culprit was discovered, the young woman was calm and happy.

Yet we parents are being taught that everything society considers wrong with our offspring is the fault of autism. More lives have been destroyed by this attitude than I can count.

This journey isn't about how embarrassed parents might feel that our children are disabled. It isn't about how things look to others. It is about preparing our disabled children to survive and navigate our world with as little stress and as much independence as possible. It is also about teaching them that society is also interdependent, and it is perfectly natural to need help and supports to safely navigate their lives.

Let us begin by understanding our own offspring as much as we are able. Let us realize everything we try to do with them on the excuse we are doing something for their own good has consequences.
Let us get our own headspace together so we can mentor confident, happy, autistic adults who know they are disabled and are fine with who they are.

Peace

Autism 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

Autism Month Essays: What is Wrong With This Picture?

Google Glass
By Dan Leveille (danlev on Wikimedia) - Own work, CC BY-SA 3.0,
https://commons.wikimedia.org/w/index.php?curid=33220901

A very large failing in the autism conversation is inherent in the way things about autism are presented. Regardless of the merits of the content, the way it is presented to the public feeds a cycle of structural ableism and structural racism that do great harm even when the content itself appears positive.

A KQED Science news article is a typical example of how structural ableism and structural racism are perpetuated in a brief news post. Even a cursory look at the article makes this apparent.

The title of the article is "Google Glass Flopped. But Kids With Autism Are Using It to Learn Emotions." The reader is immediately hit with a trope about autism that is ableist and incorrect. The title is misleading and sets the tone for the way the content is presented.
The presentation implies that:

a. Autism is an illness rather than a disability which is false; b. The use of "kids with autism" implies person-first language is accepted by the entire autism community which is false; c. Autism is prevalent exclusively in children, reinforcing the trope that autism did not exist until recently which is false; d. Children with autism don't know what emotions are and must, therefore, learn them which is false.

 Rather than including a discussion of prosopagnosia, a form of visual agnosia characterized by an inability to recognize faces, and the fact that a vast majority of autistic people have some form of this condition, and rather than approaching the research of Google glass as potential assistive technology to help individuals with prosopagnosia recognize greater detail in faces and thereby recognize changes in expression, the way this study is presented in this article pathologizes autism, and displays the study as a way to teach autistic people human emotion, something they already know. Foundational misunderstandings that parents and family members harbor towards their autistic loved ones stem from the promotion of these stereotypes about autism. The exclusion of what impact conditions like prosopagnosia, synesthesia, and auditory processing disorder, can have on how an autistic individual of any age interacts with others and how those conditions are improved by Google glass is also critically omitted from the article.

No attempt at defining for the reading public why autistic people don't make eye contact is done. Increased eye contact is simply lauded as an improvement in the symptoms of  autism as a medical ailment. Having lived in societies where making direct eye contact can be seen as rude, invasive, and a sign of promiscuity, I find the issue of eye contact not being addressed in general, and how much eye contact is appropriate by culture not being addressed in particular,  rather sad.

A deadly disservice is done when research on how to implement assistive technology is focused on autistic children alone. This implies that autistic adults somehow can't benefit from new supports and assistive technologies. When research focus is only on autistic children with verbal speech it is a devastating disservice to nonspeaking autistic populations who might benefit from the same assistive tech. When a piece of research is presented as if the sole focus is children who are well off and white it perpetuates the myth that autistic children are exclusively white, upper middle class, and geeky people who have social skills challenges. This increases the likelihood of continuing a cycle of misdiagnosis of autistic children of color that denies them supports in education, health, and assistive technology. This continues a cycle that results in the appearance of autistic children of color presented as "more severe" than their white peers.  It is a perpetuation of racism and ethnic bias in autism research and the autism conversation.

The presentation of this research in the KQED Science article as a tool for potential home based therapy for learning emotion rather assistive technology to help autistic people differentiate emotions they already have and know in the people around them is ableist promotes the trope of the autistic child lacking a piece of what makes us human. The damage in presenting autistic people in general and autistic children in particular as lacking or incapable of emotion can lead to life-threatening situations and irreparable harm in the name of  therapy, education, and behavioral support.  It can change attitudes in care providers that increase the potential for harm to vulnerable autistic children and adults needing intensive supports. How information is presented matters just as much as the content itself. Especially when how something is presented can mean a complete shift in how an autistic child is perceived to be by our society as a whole.

The most critical part of this study, an elephant in the room of the autism conversation, is that this study was conducted in Silicon valley. The discussion of wide dissemination of Google Glass for autistic children as an assistive technology tool is an insult to middle to low-income families and autistic adults who might benefit from them. The glasses are a whopping $1,500, and this excludes the monetization of any app the glasses would be paired with for therapy. Even if the cost of production dropped to between $299 and $500, expecting families to afford this when they cannot even afford basic communication devices, additional therapies or in-home supports critical for their children's ability to thrive as adults insults. The conversation in autism policy continues to be driven by the rich and those with power and privilege. The irony that this study could have been conducted collaboratively in a classroom population of title 1 school autistic children in Oakland is not lost on me. Why did the research team choose to ask for volunteers for phase 2 of this study when study candidates could be gleaned from the greater autism community in such a way that full inclusion could be achieved?

If the transformative change in assistive technology available to the autistic population is really meant for all, then research policy must dictate that funding allotted to such research include the entire autistic population across economic communities, across ages, and across degrees of disability.

Until that happens, it should be understood that what is being read as research content much of the time is a method of repackaging an ableist presentation of autism research; an extension of structural ableism and discrimination driven by negative tropes embedded in public policies on autism and how the public is asked to view it.

No inclusion in society will be possible until these disparities in the way research is conducted and information about the research distributed are addressed.

Neurodivergence and The Term Normal

Young girl to Azeem:                          "Did God paint you?"
Azeem (Morgan Freeman):                  "For certain."
Young girl:                                           "Why?"
Azeem:                                                 "Because Allah loves infinite variety."

- "Robin Hood Prince of Thieves"

I'm on a mission to throw out the word "normal" from vocabulary and dialog related to autism. The main reason is no matter where I travel in the world or who I meet, I have never come across a "normal" person. The word normal in the lexicon of autism is used to denote an idealized average child. Neurodivergent children, like human skin colors, cannot be based upon any ideal. There is too much infinite variety in everything else about us. Why should our neurology be any different? 

Image Description: Series of photographs of people of widely varied colors under each person's photo is the Pantone number that exactly matches their skin tone ©Angelica Dass pantone skin color spectrum chart

Artist Angelica Dass has raised the bar on cataloging the spectrum of human color variation with her Humanae project. There is no one in any discipline that serves the autism community cataloging and mapping the spectrum of neurodivergence in people.  When research is done on neurodivergence it is never done with the intent of cataloging divergence as variation and recommending accommodation and support where neurology poses barriers to inclusion.  We do not have a map of  the spectrum of divergence in neurology. As long as we fail to properly study the human brain before making sweeping decisions, such as creating and prescribing medication to suppress and "correct" things we don't understand,  the term autism will continue to be used as a multimillion dollar medical model cash cow boogie man that is of no benefit to either neurodivergent people or their families. To set a standard mid point in a bell curve of what constitutes "normal" brain function without cataloging the entire spectrum of human brain variance on this earth is a bizarre way to go about science. An interaction I just had with my neurodivergent son brought to mind the reason for this part of the culture of ableist viewpoints in perception of neurological difference. Most research is done without the input and needs assessment of autistic people themselves. So they have no voice in what is and is not done with regards to the idea of accepting variations in neurology in general and diverse autistic expressions in particular.

Before you rush to say you know of any "normal" person start by defining what normal is in your mind. You'll find that 'normal' neurology is heavily culturally defined.

Look at your neurodivergent loved ones as who they are. Don't compare them to a societally imposed standard they aren't meant to meet and find them lacking. Then see about advocating for services, supports and accommodations that will help them gain societal inclusion, autonomy, self agency and self advocacy. Expand beyond the limits of terms like 'normal,' understand that variance in neurology like variance in every other aspect of human expression is meant to exist and help to work on cataloging, understanding, and embracing that variance. 

Peace

For Sharon da Vanport