12 January 2015

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.

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I have no idea what this guy's talking about. Who comes up with this schtick anyway?