Don't Fade Me to Black at Church

My wife and I discovered when we were expecting our first child that I myself actually have Aspergers, albeit mildly enough to "pass" most of the time as "neurotypical". Then Tyke came along, and as it turns out he is moderately autistic as well. He is a wonderful kid, but thoroughly a handful to deal with. But he does talk, and is starting to learn to read in his "Inclusion" kindergarten class, so he is already years and years ahead of many autists. A friend of mine (a Major in my Army Reserve unit) has an autistic 19-year-old son who neither speaks, nor writes, nor (as far as his dad says) has any other language communication skills. But being "nonverbal" (non-speaking) shouldn't be a barrier left up: in the memoir Reasonable People, author Ralph J. Savarese tells of adopting his autistic son D.J. from foster care, teaching him rudimentary sign language and then to communicate by typing sentences on a label-maker. D.J. himself, age 13, wrote the last chapter of the book. He (D.J.) started college out-of-state in 2011, according to his dad's website: a more "high-functioning" achievement than many "higher-functioning" autists are ever afforded. But as common as autism is (by some estimates), there are almost no church ministries to reach out to those "on The Spectrum" at all. No one congregation is likely to have more than a couple of autists in it, except the mega-churches, and for those that do, they are likely all in one family: sibs or cousins at most. Even at First Presbyterian, we do have a small "Helping Hands Outreach" for special-needs families, but with only about three families enrolled, representing Downs Syndrome, Rett Syndrome, and just ourselves for ASD. And though the needs of the various families overlap well enough in terms of coping, and support needs, the needs of the patients themselves are very, very different. For autists (all of us autists, including aspies like me), sensory and signals intake and processing are skewed, and communication ranges from "more difficult than usual" to "dang near impossible," depending on the patient, the day, the current stress levels, and the skills he's learned for working around and through those skewings. The attached essay covers some of my own thoughts on the autism experience and diagnosis.
But as Paul says, "faith comes through hearing, and hearing through the word of God" (Romans 10:17, emphasis added). The number one obstacle to working with autists themselves, as well as I can see, is communicating with them. I myself, long before I'd heard the term "Asperger's Syndrome", was voted "Most likely to be misunderstood" in my senior class. I have difficulty communicating with Elias---a lot! But so many men and women and children, diagnosed as "classical autism" patients, not only will never speak but are never granted the patient enough teachers to teach them language use at all. In Savarese's memoir, he tells about things D.J. remembered from before he learned to write words: things said to him or around him that stayed in his memory with no place to go until he learned language and recognized its presence (and forms) in his memories. His dad reading early chapters to his mother, or the things his tormentor said to him in the foster home when he was three. But good or evil, he only learned of these things after he learned language. Whether spoken, written, or signed, language is the primary medium of human communication and it is no accident, I believe, that God spoke the world into being (Genesis 1) and identified Christ as the Word (John 1). Without language, in some form or fashion, how will they hear (or read or sign) the gospel?
So this is what I see a need for: a church or parachurch ministry specifically targeting the needs of the autistic community. Not just the needs of the autists' families and neurotypical caregivers, but very specifically the "patients," whose needs, desires, and perspectives are too easily lost behind the burden of their care. This does not make them less real, or less valid! In reading the words of teens and adults with autism or ASD diagnoses, the need for validation, for recognition as people, individuals, recurs again and again. Some of them are "classical" autists, who have never spoken a word aloud. Some taught themselves to read and to type. But aside from a few select (sometimes dubious) secular organizations, there's almost no one even looking at the needs of autists and certainly no organized effort within the church.

So this is the brainstorm of what I would like to see in autism-outreach ministry (or ministries: for the scope of it and the number of specializations demanded, it'd take at least five to seven independent organizations, I reckon). Not everyone in this network would have to be exclusively or even primarily working with autism issues, just deliberately doing so. Many of these issues can and should also be outsourced into the local communities but facilitated where possible through the church.
1. Language and Communication training, such as
o American Sign Language (ASL) as needed/practical
o Speech Therapy as needed (Elias' school speech therapist attends First Pres, actually, and volunteers with his Sunday School sometimes)
o Literacy Training, both handwriting and typing skills
o computer skills

2. Family-help services, including
o parenting help (counselling, seminars, resources, childcare) for autists, parents
o marriage counselling for parents of autistic patients, and for autistic/aspie adults and their spouses
o medical help for co-morbid conditions
o adoption/foster-care coordination and assistance

3. Evangelism
o Present the gospel in a clear, believable way that impacts everything (otherwise it impacts nothing: but this should be a given). We autists, perhaps more than most other groups, are prone to thinking in explicit binaries.
o Discipleship and mentoring, both for autists and family members, and family-to-family mentoring as well.
o Church advocacy

4. Skills and Vocational training
o Physical and Occupational Therapies as needed (might be outsourced)
o Scouting programs for kids and youth (BSA, Trail Life, Girl Scouts or Girl Guides troops; Cub Scout packs, et cetera) geared specifically to autistic youths' needs
o Life skills programs (like aspie advocate/writer/mechanic John Elder Robison's JE Robison Service does, training youth diagnosed with ASD how to restore classic automobiles, for one example)
o Social skills courses, or even cotillions
o Resume, interview, and budget seminars

5. Social advocacy and occasionally political

I know it's a whopper of a big order, but we serve a big God. And I think that there really is a need in the church to reach out to the officially "unreachable" and the awkward and those everywhere in between: an unseen mission field stretching "eckward and andward" (to borrow from C. S. Lewis’ The Dark Tower) as far as the eye can see.

Don't Fade Me to Black: A New Paradigm of Autism. (Essay)

I am not a scientist, trained and tutored in the finer points of biology or neurochemistry, nor of psychology, psychiatry, or toxicology. I am an artist, an autist (Aspergers type), and the father of an autistic child. My son is four and a half years old at the time of this writing: still learning to talk and still potty-training, but with a better musical ear (to all appearances) than I'll ever have and a fascination with trains and how things work. I took him to the local history museum on a recent Saturday and walked past fine examples of pre-Columbian pottery and colonial militia gear, but there was one thing on his mind:
“Where's the train? I don't see train.” Then we came into the gallery where a real live Mikado-style locomotive was parked, tender and all, with a walk-through coach behind it on the old railroad tracks they'd relocated into the building. “There's train!” and he was in awe.

That's me, and that's my son, and this is my perspective on what are termed “autism spectrum disorders,” based on my own experience and my reading of other autists' experiences and observations. So many people say that autism is “a mystery” and that “nobody knows” what causes it. Let's set this straight: it's almost entirely hereditary. It always involves, to a greater or lesser extent (so far as I can ascertain) a mix of sensory and communication disruption: in my case, certain sound frequencies are painful, I'm abysmal at reading social subtexts, and when I was a teen, both garlic salt (even at the edge of scent) and the florescent lights in our kitchen gave me migraines. For my son, it's loud noises, and discordant singing (like mine). Showers set him off (or did until recently), and so does the blender. He is OCD in ways I have never approached—I suspect he gets that from his mother. I delight in language and accents and a well-turned phrase: he revels in tactile stimuli and a vigorous full-contact romp. Of course, some of that is inherent in the Y-chromosome I gave him, and some in being four (and a half!) years old.
In every case of autism or ASD, there is a sensory imbalance and a disruption of communicative abilities. The popular diagnostics call it “Autism Spectrum Disorder” (that's what the initials ASD stand for): the DSM-5 of the American Psychiatric Association is notable for agglomerating four previously semi-distinct disorders under this single heading, and most of the Official Experts have gone along with the rearrangement. I'm not saying it's a bad thing, either: hear me out.

One of the most important changes in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is to autism spectrum disorder (ASD). The revised diagnosis represents a new, more accurate, and medically and scientifically useful way of diagnosing individuals with autism-related disorders.
Using DSM-IV, patients could be diagnosed with four separate disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, or the catch-all diagnosis of pervasive developmental disorder not otherwise specified. Researchers found that these separate diagnoses were not consistently applied across different clinics and treatment centers. Anyone diagnosed with one of the four pervasive developmental disorders (PDD) from DSM-IV should still meet the criteria for ASD in DSM-5 or another, more accurate DSM-5 diagnosis. While DSM does not outline recommended treatment and services for mental disorders, determining an accurate diagnosis is a first step for a clinician in defining a treatment plan for a patient. (Autism Spectrum Disorder Fact Sheet: American Psychiatric Association, 2013)

So far, so good. These are indeed related diagnoses. But to read the usual literature about the unified diagnosis, this “Autistic Spectrum” or “Autism Spectrum,” or just “the Spectrum,” is apparently conceived as a single monochrome band based on how severe the patient's symptoms are or seem to be.

At the “white” end of The Spectrum, we see the “neurotypical” or NT population, those who are not autistic in the least, including most Autism experts and professionals, and the folks behind such victimite-advocacy groups as “Autism Speaks” (ironically notable for refusing to host autistic speakers at their events). Next we have the “Aspies,” like myself, for whom the Spectrum is seen off-white, dull, plastery white or pale grey instead of Neurotypical gloss white, new-dry-erase-board white. Just autist enough to tell the difference if you've seen it before. Next to and overlapping Asperger's Syndrome is “High-Functioning Autism,” a diagnosis for those with brief delays in childhood development and a lifetime of nagging setbacks due to their atypical neurology. At the other end is the classic “autistic disorder,” as exhibited by non-speaking patients like DJ Savarese of Reasonable People (Ralph J. Savarese, (Other Press 2007)). Little to no speech. In many cases no means to communicate their own needs and desires to anyone else. Is it really because of an intellectual deficiency, or just the failure (for whatever reason) of those around them to reach out to them sufficiently and teach the necessary communication skills? I cannot say: each case is unique. Somewhere between the “classic” and “high-functioning” autisms is “childhood disintegrative disorder” or Heller's Syndrome for the man who first described it: this is the “regressive” autism wherein previously learned basic skills fall away for reasons unknown, after two or more years of uneventfully normal development. Then there's PDD-NOS, like my son. His mom says he tested “all over their charts”. But what is this “Not Otherwise Specified” piece? Just because you can make an acronym doesn't make it any less globular. It's a diagnosis with the skeletal system of a Hutt, all heavy and lumpy with no frame or substance, an in-there-someplace diagnostic. The new ASD blanket category is better for its more explicit parameters, but widening the bulls-eye across the whole target helps nobody's aim.
So why am I here, and what am I writing to propose? This is not a Neurodiversity article, or an essay on the equal-rights-of-the-severely-impared. I want to write about the Autism Spectrum, per se, and examine it as a spectrum. No prism yet has split white light into a greyscale band.
Autist and autism researcher Temple Grandin has wondered publicly about the current autism paradigm that diagnoses and treats the disorder (and it is a dis-order) according to deficient skills and capabilities. Why doesn't anyone examine the sensory side of autism, Dr. Grandin asks (http://www.youtube.com/watch?v=2wt1IY3ffoU). I'm not by any stretch a neuroscientist, but as God's given me a capable brain, I intend to. At least insofar as to propound a new theory about it. From one “end” of The Spectrum to the other, there are two areas in which every ASD patient is affected: sensory disruption (usually in the form of one or more hypersensitivities) and communication (especially language). Motor skills are also usually affected. But this is old news: what's that have to do with anything?
Sensory, motor, and language disruption have one thing in common: signals processing. It isn't in the body, and it's clearly not a mental deficiency, but in the wiring of the brain itself. I have been asked several times over my years with the Army Reserves why I don't run faster than I do by friends who say I've got an “athletic build” or something, but I don't have an athletic wiring. My son runs very much in the style of a headless chicken, as did his father before him. I had to learn how to run, as an adult, practically limb by limb. So where am I on The Spectrum? What does the so-called Autism Spectrum look like, anyway?

This is the standard Color Selection panel from one of my favorite art programs, but it could be from most any image program, ever. From left to right we see the spectrum (there's that word again!) of visual light's hues in a regular series of 360 divisions (one degree, each, around a color wheel). From top to bottom they all fade into mute greyness, a parameter called “saturation” in referencing a color's divergence from the center-axis greyscale. The black-to-white column on the side represents the color's intensity, its distance from black, and it is the very same image that I used to illustrate the NT perception of the Autism Spectrum in the image above. I'm dead serious: crop-rotate-SaveAsNew, and there's your Autism Spectrum as represented by Professional Neurotypicals. So am I black if I have a “Classic Autism” diagnosis, or am I a brilliant royal blue?
I would like to propose a new way of examining autistic symptoms, one to more accurately target patients' real disabilities and handicaps and illuminate their particular strengths, because it is my strong suspicion that the sensory handicaps and “savant” gifts are at least related, if not fused, in most or all cases. How many musical savants, for instance, have hypersensitive ears? The color wheel as the computer represents it, or as taught in most art classes, has three primary and three secondary colors, and a gradient spread between them of tertiary and quartinary divisions of hue. It does not matter at this stage whether we use the computer's RGB/CMY divisions, or the paintbox's Red-Yellow-Blue and Green-Purple-Orange divisions (ignore Indigo: it's a dye for jeans and little else). But I suggest that these six spokes of our wheel be associated to the sensory input bandwidths on which we receive and process data about our world. The senses I would calibrate for are vision, hearing, touch (tactile, but we might include thermal), taste, smell, and kinesis or balance. Each color's intensity would be calibrated based on the degree of sensory sensitivity and acuity as divergent from normal baseline and/or as contributing to the patient's disability (a patient ostensibly at “Aspie”-level or higher might register brilliant, purest green for a low auditory pain threshold at 95 khz, but the NT world won't notice that she militantly refuses to be around certain sounds).

Many patients are also hypersensitive in more than one area: I might almost say most autists are polysensitive to one degree or another. So with multiple peaks and valleys across the sensory range, a patient's ASD Diagnostic Spectrograph might look like this (as before, the color intensity indicates the specific sensory acuity or pain-threshold, with the grey-white baseline being neurotypicality in a given area).
Of course, we autists are not the only ones who experience sensory imbalances. My wife has OCD, but otherwise neurotypical, and certain textures (velvet, for instance) and sounds (mostly mine) drive the dear lady quite to distraction. Would a diagnostic spectrograph be useful in treatment or management of OCD? It may, but the link between sensory acuities and natural gifts in OCD is not as well documented, even anecdotally, as it has been in autists or aspies, and that link is what I want to focus on with this model of the Autistim Spectrum. If an autist's diagnostic spectrograph shows peak hypersensitivity in visual input, his interests, talents, and passions will also likely (by my model, anyway) be found in the visual range. If the autist's sense of smell is easily triggered, his skill set may also lie among olfactory passions like cooking or perfuming. Identifying the individual's particular sensitivities and strengths, and how these interface with one another, would go a long way toward precise, holistic diagnoses, and aid in setting up therapy or treatment options according to the individual's real needs.
But what about stresses of various sorts, and the effect of stressors on neurosensitivity and task performance? Should a patient's treatment be built around his strengths in an optimized scenario, or at his daily average stress and heart-rate levels? Shouldn't the capabilities at “optimal” levels be pushed (¡gently!) into the less-optimal operating range? What about tasks one is capable of at one level (motor skills, for example) that is prohibitively out-of-range for another task (say, speech or language processing)? These answers, and their implications, are well worth further examination, but I don't have space for it today.
The benefits of the 2D pane spectrograph (or even disc, like a color wheel, meeting the ends in a single unbroken gradient with the squiggle now presented like the top of a cedar stump, or like an exploding quasar, but most certainly not an indeterminate point on a vague grey line) begin with specificity: not only can we now chart the severity of the autistic variance from the norm, but the shape of that variance. No two autists will chart the same way, because no two people are the same.

Perhaps the spectrograph should be normalized at a sensory sensitivity midrange: as people both on and off “The Spectrum” have areas of hypo-sensitive, as well as hypersensitive, response. Deaf-spots (inaudible sound frequencies between audible ranges) or colorblindness may be considered as forms of hyposensitivity. Here we see the entire green bandwidth, and adjacent areas of cyan and yellow, are registering below the line, as is the interface band between blue and magenta. The disk representation of the same graph would look like this:

As you see, the NT midline is crossed in several places. But no test subject, autist or not, is going to trace the midline exactly on the circle.
It is the difficulty with any diagnostic schematic that it must be broad enough to cover the affected population accurately and specific enough to focus on the patient's real needs. In this, the current DSM-V set that seeks to mash all autism-related disorders into a single and otherwise nondescript “spectrum” had failed, and rather badly. The editors apparently saw that these four or five diagnoses exhibited similar symptoms and so they stuffed them into the same drawer without significant examination of the reasons why the Autism Spectrum Disorders, as they call them, manifest so similarly. For most of their diagnostic history, these conditions have been defined in terms of the outward limitations exhibited by the patient: what he demonstrably can or cannot, does or does not do, relative to the population at large. Most of the treatments and therapies seem therefore to pursue re-teaching the “lost” skills or abilities, so that the patient can in theory do those tasks whose learning or execution has otherwise been inhibited by the disorder. Occupational Therapy, in other words, and I'm all for it in its place. But when the diagnosis is built around the degree of therapy the patient is expected to receive, as now seems the case with autism-type disorders, the attempted treatments are hit-and-miss, with no traceable pattern or success rate. By this method of diagnosis and treatment, we are not even addressing the disorder itself: only the tertiary symptom of localized disabilities. The diagnostic rubric of the current tests certainly diagnoses most people who have ASDs as such, but once diagnosed, a patient may go from classic/severe autism to “Asperger's Syndrome” between age two (at first diagnosis) and twelve (at the second), or be told that he “no longer has” an ASD, based on the success of his therapy regimen. But if the underlying neurology is still in place, then only the outer behaviors will be affected. Eccentricities may resurface, sometimes growing to “disabilities” again, as the patient drops distasteful habits learned in therapy. Some hypersensitivities never will be desensitized. Some can be. And some, the patient may not want to be. With training, some hyposensitivities may even be brought nearer full strength.
In sum, the current system has merit, but primarily insofar as it identifies the Autistic Disorder. When used as a more precise arbitrator of medical condition, it is nearly useless and may do greater harm than good when a patient's inability to communicate with caregivers at the time of testing becomes a life-in-death sentence by which he is treated as an invalid and an infant for the rest of his life, with little to no further attempt at teaching or communication because he “can't” learn, having failed to learn at the prescribed time and by the assigned methods. Likewise if the baseline neurology is not adjustable, then the baseline diagnosis will not change. Even when the patient reaches a “high-functioning” status in therapy, what sensory acuities he has not blunted or circumvented will still trip him up regularly. So my proposal, not as a scientist but as an autist, is to follow the general diagnosis of ASD with a sensory-acuity/pain-threshold battery from which to chart the spectrograph, determining not only what the patient's disability consists of, but why thus and not otherwise. Only then can we know any autist's own position on the spectrum, and only then do we have a real basis around which to identify which therapies will meet the autist's own needs.

Josh Griffing, October 2013