Regardless of which candidate holds greater autism awareness, both call for increased funding (including Obama’s insurance reform measures). In Pennsylvania, a newly-passed bill has been heralded as a triumph for compelling health insurance companies to fund up to $36,000 per year in specified services for families of children with autism under age twenty-one. More pointedly, and as directed by the bill, insurance will now be required to cover Applied Behavior Analysis, promoted as most efficacious among treatment options. ABA is defined in the bill as “the design, implementation and evaluation of environmental modifications, using behavioral stimuli and consequences, to produce significant improvement in human behavior or to prevent the loss of attained skill or function…” Call me a killjoy, but instead of a victory I see the bill as a defeat. It is, in essence, not only an endorsement of one therapy to the exclusion of others (covered by insurers, that is), it green lights the additional, exhaustive expenditure of funds that no parent is going to decline if it’s there for the taking. But there is a greater issue at heart.

ABA requires that professionals—degreed, specially trained and certified in ABA therapy techniques—engage autistic children in intensive treatment activities. Oftentimes, these activities are in the guise of play and usually take form as “drills” in which the ABA professional repetitively conditions the child to comply with various modes of conduct, activities, and desired responses. In one example, the ABA professional, seated across from the child, holds up a flash card of a cow and prompts the child to identify “cow” until he does so correctly and often enough to be considered to have mastered the skill. Negative responses, tripped by “behavioral triggers,” are identified and modified in the environment or discouraged in favor of positive reinforcement. The positive response of the successful child may be rewarded with verbal praise, a food item, favored activity, or toy.

Sounds great, right? The only problem is that’s not how most autistics think, learn, process and retain information, let alone possess the capability to transfer what’s learned in ways that are functional and appropriate. And if it sounds similar to Pavlov’s dogs you’re not far off base, though what thrills parents is behavioral compliance—their child has been conditioned to suppress his autistic traits long enough to be less of a “behavior problem” and outwardly present as “normal.” But compliance for the sake of obedience does not equal success. It means someone has been conditioned to reply by rote. Further, we’ve portrayed autism as so complex and complicated, we’ve disempowered parents from parenting. We’ve supplanted their ability to develop a relationship with their own children by dictating that a professional, previously a stranger to the child, is solely qualified (and required to be so) to interact with their child for hours on end. This creates system dependency instead of imparting skills, techniques and strategies to parents that empower them to parent effectively, capably, and competently.

If you want me to learn “cow,” help me learn it naturally in the context of a mutually respectful, reciprocal relationship that makes it interesting, pleasurable, and intellectually stimulating to learn. If you want me to learn “cow,” show me a cow. Take me to an open pasture and introduce me to cow; or at the least, let’s learn about cow together, parent to child, by reading age-appropriate material, watching video of cows, and creating recipes using the food produced by cows. This is the type of quality interaction that those of us on the autism spectrum record for safekeeping and replay years later as pleasing recollections. By contrast, there are precious few, if any, adult self-advocates who joyfully espouse the childhood rigors of systematic programming.

As Senator McCain advises, there are myriad options for supporting persons on the autism spectrum to integrate with their bodies, and to tame and refine their reactions to the environment; some are respectful, some are not, and some are simply abuse disguised as treatment. To parents, use as a measuring tool the following queries: Does the treatment presume that my child is intelligent; does it help me further my understanding of parenting my child without system dependency; and is my child happy, interested and making progress? And to our presidential candidates, a caution—be careful of what you wish for when planning for the future of our nation’s autistic citizens, and above all be clear to distinguish the “cow” from the manure.

© 2008, William Stillman

It is well known that one of the symptoms of autism is problems sleeping.  Some don’t sleep at all, while others (myself included) seem to sleep way too much.  Both can lead to problems.

So what can be done to make sleep go better, easier and even healthier for individuals with autism?

Below are a few ideas you may want to try.

Bedtime Routine:

One of the easiest things you can do to improve your child’s sleep is to work on the bedtime routine.  A regular bedtime and wake up time may be difficult, yet it will be very helpful.  Also consider the environment around bedtime.  If there is noise from socializing or from a television elsewhere in the house, it may have a negative effect on your child’s sleep.  Also, be sure to have the same routine before bed and do things in the same order.  This can help promote sleep.

Weighted Blanket:

This would be for the children who crave pressure.  Weighted blankets can make a big difference in sleep.  They are expensive, though there are instructions on the net on how to make your own.  The weighted blanket helps those who have underdeveloped tactile and/or proprioceptive systems to recognize where the various parts of their body are.  This helps them to feel more comfortable and that aids in sleep.

Sound Devices and CDs:

White noise has long been known to help people get to sleep.  The problem with autism here is that most white noise generators have around five to ten seconds of noise that continuously loops. Children and adults with autism can pick up on this quickly and the generator them serves more to keep them awake than to put them to sleep.

On my site –  http://www.thomasamckean.com — there are CDs I have made of nature sounds in the Blue Ridge Mountains where I live.  These were made with high quality recording equipment and do not loop.  This is one solution to this problem you might consider.  There is also software on the web that can generate random white noise and nature sounds.  There are a few freeware programs that do this, and I will be posting them on http://www.neurointegrity.com soon.

Of course, the more frugal among you might want to try a fan, which will do the same thing, or you can use an analog radio that is tuned between stations, thus producing white noise static.

Melatonin:

Melatonin is a natural hormone which helps us to sleep.  Synthetic melatonin has been used also for this purpose.  The last I heard, the jury was still out on safety and appropriate dosages.  One thing we do know is that by using Melatonin on a child, it may delay the child’s puberty.  Some parents who were aware of this have decided to use it anyway because they felt it was worth the delay.   If you decide to try Melatonin for your own child, please research it thoroughly so you can make an educated decision.

Medications:

Medication is an option, but should be used as a last resort.  Especially if you have a young child who has problems sleeping. I know of parents who have had some success with Benedryl, though many parents have also reported Benedryl has had the opposite effect, making the child hyper all night.  Again, it is wise to be educated before you start giving your child drugs.

By following some simple common sense ideas, you may find a way to help your child get the sleep he or she needs.

© Thomas McKean

But whilst stereotypes abound about sensory hypersensitivities of kids with autism, and whilst I had my equal share or niggles with things too tight, too rubbing, too whatever, I wanted those shoes off for another reason.  My feet were my eyes.

I was face blind, relatively object blind, and context blind.  Meaning blindness occurs when you can only process the part and each piece that would normally be processed as a whole is instead a series of disconnected parts.  So without this cohesion there is little sense of where one is in space or the distance one has traveled, the changes in those spaces and the relationships of these new experiences to past ones.  But there are various compensations.  One can use echo-acoustics, making noises into spaces or at surfaces, even tapping them, to hear their ‘voices’ which give away their substance, density, their distance and relationships to things around them.  One can walk to the ‘point of symmetry’ within any room, garden, staircase, any place, and then turn in a circle like a compass might to map the relative distance of all other points from there to the peripheries.  One can run one’s hand over the boundaries to get a tactile sense of how the room is constructed.  One can use peripheral vision which cuts out the amount of information coming in, leaving more brain time to process what’s left more cohesively than if looking directly.  But one can also take one’s shoes of and voila!  The feet become the ‘hands’ which have constant contact with shifting textures, temperatures, boundaries, distance, and the kinaesthetic feedback of walking on various surfaces.  Put shoes on someone with visual agnosias and it’s like blindfolding someone without visual agnosias.

So how can you tell if a child has visual agnosias, especially if they have no functional speech?  Do they navigate their world through tapping, smelling, flicking objects?   Do they disassemble toys and games into their component parts and enjoy each part at a time?    Do they use objects primarily for textures, smell, sounds, flicking or for catching light, watching movement or creating lines and patterns?  Do they stare through things as if blind, jump and climb on furniture like the cat might and appear to ignore all contextual cues?   So they prefer the mirror or even watch the world through mirrors and window reflections?    Do they greet your hair, earrings, coat, watch your feet and fingers or smell you for recognition?

Visual agnosias don’t have to be severely disabling if we understand them and the ways severe visual agnosias can disrupt language development, relationships and learning.  We need to remember that enjoyment of visual patterns does not make one a visual thinker and that those with severe visual agnosias may think musically, or in movement or think in textures, smells, feelings, systems, even devoid of mental pictures or only have fragmented ones, able to visualise the table leg but lose the table top.  And yet the same people may have incredible serial memory for events, movement and spatial layouts if they’ve navigated them physically.

Remember that  if you are teaching someone with visual agnosias, don’t rely on pictures which they may only see in bits, that gestures and characterisations may be more complete and make better links to learning language with meaning than pictures will.  Remember that having visual and verbal agnosias means each contributes to the other and unless you teach through something other than just visual or verbal you will be that person’s greatest source of disability.

And it is time we acknowledged that being deaf, blind, deaf-blind or having visual, verbal or visual, verbal and body agnosias, can be an isolating, alienating experience which can help some people to develop ‘autistically’ until those deficits are understood and responded to appropriately.  It is time we stopped diagnosing agnosic children as autistic ones and diagnosed agnosias with or without the complication of autism.  And whilst we’re going to try and help kids protect their feet from broken bottles and debris, from burning hot tarmac, let’s remember that being able to connect to the world, make sense of it, feel it consistently, is one of the things which may stop a meaning deaf, meaning blind agnosic child from otherwise drifting off into, even remaining in, their own ‘autistic’ (agnosic) world.

© Donna Williams

Along with obsessive masturbation, smearing feces is one of the behaviours most cited as one of the horrors of ‘low functioning autistics’. You might try to imagine what it’s like for such families, cleaning feces off their child’s face, eyes, out of their child’s mouth, off the walls, the furniture, the bedding, the awareness it’s all under the child’s fingernails and passing bugs, that ingesting it may even ultimately reduce the health and lifespan the child. But how autistic is it?

Interestingly, those with autism may develop all manner of obsessions, fixations, phobias, euphoria’s. I would get blessed to the max on seeing pink street lights, red patent leather (pale pink does it too), chandeliers, opaque green fluoro plastic. So is poo smearing ever part of a range of fixations? YES. Like most issues called ‘the autism’, compulsive and obsessive poo smearing has its own name; Coprogenics.

Coprogenics involves the eating and smearing of feces for pleasure and surprisingly, 1% of the human population have apparently engaged in it at some time!

Without boring you with a link off to the Urban Dictionary (a little too colourful for some and hardly a medical resource), here’s a series of quotes from it:

Coprogenics should not be confused with Coprophilia which is a deep love for feces, which might involve the smearing or storage or loving attention being given to feces.

Coprogenics is essentially the eating of feces and digestion of human feces, often seen by mentally subnormal, or else their close relative ‘the genius’. W.A. Mozart was a feces eater, it eventually killed him in this thirties.

Eating feces is not uncommon and it is estimated that 1% of humans have indulged in this activity. Recent studies show that Danish, Japanese and Philippine nationals indulge in this activity, secretly, asian women particularly seem to enjoy eating feces although this is only 1.6% of the population.

So why might coprogenics be more common in some with mental illness or severe developmental disability? Even some imprisoned, sensorily deprived animals do it. Is it possible that these things contribute to a reduced level of inhibition to a human behaviour 1% of the population may have indulged in with conscious volition? Is it possible that in the absence of cohesive cognitive functions, or in the presence of sensory deprivations associated with severe sensory perceptual or communication deficits that some individuals entertain, even arouse themselves with something as primary as poo smearing, even eating their own feces.

I’ve been to the homes of poo smearing kids. When they’ve got this muck all over them, even in their eye area and mouth, they are generally quite content, sometimes even smiling. Perhaps its about time we looked at how to compete with their motivation toward coprogenics so that something else might be as familiar, as rewarding, as their own feces.

By contrast, those with severe Exposure Anxiety have employed poo smearing to rid themselves of social entanglement, human proximity, and social invasion of their room and those with EA may also find incontinence can be preferable to the social intrusions of supervised toileting. But these people don’t appear blissed out by smearing and when the EA is countered these behaviours go.

In considering the ubiquitous proclamation for no complaining, I thought about the state of autism affairs, and contrasted my governor’s position with a documentary about parents of children with autism I watched about a year ago. In it, a group of parents are interviewed for their perspectives on raising a child with autism and the impact it’s had on their lives. To be blunt, the film’s a real downer. The majority of the parents devote their airtime to venting, lamenting, and, yes, complaining about the terrible toll autism’s taken on them, the hardships they endure, and the financial or social sacrifices they’ve made. Perhaps the documentary’s intent is to highlight families’ struggles such that funding for services will be increased, not cut (after all the squeaky wheel gets the grease); but, honestly, their message lacks grace, humility, and acceptance—especially in the moments they are disparaging their parental roles in front of their own children.

I encounter this too—the “why me” syndrome—in certain people who refuse to see the glass as half-full. For many parents, it is only natural that, following a child’s autism diagnosis, there is a period of regret and mourning a vision lost. But to persist in this mindset, such that it permeates one’s everyday life, is not only unhealthy, it’s destructive. It’s unhealthy because of the constant, internal ricochet for second guessing one’s parenting skills and choices; it’s destructive because the negativity of continual complaining will erode the relationship those parents have with their own children.

Everything matters. Every word, every gesture, every interaction matters in how our children with autism are perceived and received by others, beginning with a tone parents set. I recall being quite saddened to hear an elderly parent, who is also a prominent autism advocate, publicly refer to his adult son with autism as an asshole. This speaks volumes about the nature of their unachieved relationship, the quality of which will likely always lack reverence and respect. In another instance, I was at a conference responding to an audience member’s question. In attempting to discern individuals that might serve as local resources to the questioning mom, I asked for a show of hands from those who could help her. And yet, as I was leaving, the same parent ran up to me complaining that she hadn’t connected with any of those who volunteered their assistance.

Most recently, during a break in a presentation, I counseled another mom about some pressing issues involving her son. I instructed her on the steps to take to correct a potentially harmful situation. When she approached me a second time, I reiterated the same information. As I was leaving, she, again, approached me and I gave her the same instructions but advised that I needed to leave, inviting her to follow up by email. She did just that, informing me that she was devastated that I “walked out” on her.

At some point, for parents such as these, the complaining needs to cease in favor of acceptance for one’s lot in life—to represent one’s child authentically. Autism already bears the pall of gloom and doom perpetuated by those who seek to pathologize it unreasonably. Parents, kindly reclaim your children with autism, and embrace your role as parents (not just “special needs” parents) with all the dignity and resourcefulness you can imbue this responsibility. It will make the difference between projecting a draining and debilitating “why me?” attitude instead of one that proudly reflects “well, why not me?” The parent of whom I just spoke was clear in telling me she was scared for her son. My reply? Then choose not to be a victim.

I have hope that someday it will be like before, and I won’t need them.

During my three years in the hospital, there was a patient named Dennis. He had a severe case of Tourette’s Syndrome and also a lot of OCD. He used to walk around the hospital with his screaming tics and bad words and he HAD to touch every single doorknob he passed. He appeared hopeless to many of us. But as time passed, Dennis got better. It was amazing to see him turn his life around, even if he had to do it with those tiny steps he took. At first they really didn’t amount to much, but with one step after another after another, eventually we began to notice. Dennis used to go into the recreation room and put on the Styx “Grand Illusion” album and sing with it at the very top of his lungs. He did that even later on just before he left. I can still hear his voice:

I’m sailing away. Set an open course for the virgin sea. I’ve got to be free. Free to face the life that’s ahead of me…

Lisa was also there during that time. She was anorexic and suicidal. She got better as well, kicking both her anorexia and her depression. She left a year before I did. Just as her life was better than it had ever been, she was violently killed. I still miss her.

The progress she made before her death (at age 17) is still an inspiration to me.

Dillon didn’t talk much. Or so his mother told me. He was quite the quiet type. Old enough for language, but no language was there. Very common with autism.

But then one random day, a day that started like every other day, Dillon and his mother were in the car. Mama put in JoAnn McFatter’s “Raging Beauty” CD, which I had given her. Then she heard a sound. It was a different sound. One she had not heard before. When she finally placed the sound, she could not believe Dillon was singing along with JoAnn!

I heard the sound of lovers singing, and I wondered at their song. Hopelessly lost in each other, their gazes locked for so long. I longed to know what they knew, but then I caught a glimpse of you…

We finally caught a glimpse of Dillon, who has had language from that day on.

I used to worry that I was a source of false hope. Parents everywhere have told me that because of me, they had hope for their children. I was uncomfortable with that for a long time. I wondered if somehow, just by existing, if I was getting hopes up only to have it be false hope later on. Just because I fought my way through some of this, that didn’t mean Johnny over there was going to.

But then as I traveled I started seeing the miracles. One by one they appeared. The hopeless emerging. Usually it happens just as it did with Dennis. With tiny steps. Even now, on www.neurointegrity.com , still it happens. The posts get positive.

Toby said his first sentence today!

Joey went in the potty today!

Mark told me he loves me today!

Tiny steps the world wouldn’t notice when they are old enough to be passed this, but which still mean the world with autism.

It has happened with other kids and it can happen with yours. When you least expect it, just one tiny step can open a door in his head, and soon those steps begin coming faster and faster.

It is altogether lovely.

I never get tired of seeing it or hearing about it.

Remember there is hope. These kids have a knack for surprising us when we least expect it. Join us at www.neurointegrity.com to read stories of hope and to post your own positive stories to help give hope to others.

Hope is a good thing, and we need all we can get.

The host of the dinner was Rosemary Crossley, who was co-author of the book, Annie’s Coming Out (with Annie Mc Donald) which was made into a major film. She’s also founder of DEAL communication centre which specializes in Facilitated Communication Training for people with speech and movement disorders (including many with autism). “You’ve got poor muscle tone” she declared, referring to Hypotonia:

I contested this saying I was strong. She demonstrated the usual resistance most people’s limbs have. My husband also showed me how his arm doesn’t fall, like mine, like a dead weight. I was amazed.

I’ve seen all kinds of ‘rag-doll’ people in my 12 years as an autism consultant but I hadn’t actually thought of myself as having been one even though some of my photos come fairly close. When I was about 5-7 years old I had my mouth physically placed into a smile for me for photographs. Just as I’d been placed into dance poses, this I presumed was just a new one. I could smile, just not usually when I was busy processing other people. It’s shocking how often people still presume mental retardation of the person with those floppy, often unexpressive or poorly expressive bodies and faces.

When you understand poor muscle tone is associated with nervous system damage and common in those with developmental disabilities you begin to grasp where these people get these misleading presumptions. And early Occupational Therapy, Physiotherapy, Brain Gym, Sensory Integration programs, rough and tumble, swimming, horse riding, dance, and general running about are all highly recommended for infants with poor muscle tone so I guess I was very very lucky.

I was put through several years of regimented dance instruction based on physical patterning. At the beginning, I remember it like being in the army, hours of being physically put into movements and forms and made to hold the postures, hours of exercises, over and over and over. I was in this for about 3 years, from age 5 to age 8. Did this movement and combined constant exposure to classical music help organize and train my brain? Who would I have been otherwise?

Before I did dance, my older brother (who was six when I was four) found me fascinating, later when he was seven he found me annoying, and then by late childhood, utterly detestable as happens with some siblings of those with autism (I had a younger brother six years younger who adored me because at age 3 and age 10 we were on the same wavelength). But this older brother had a ‘game’. He’d take my hands and say ‘make your hands all floppy woppy’ and would flap my hands in front of my face (perhaps he was getting me to repeat something I already did). They’d be lifted like they were old wet rags and he’d flap them about and then smack me in the face with them. Neither my face nor hands nor arms gave resistance. I can understand this was amusing, having a naughty streak myself, but now I understand it probably did me a favor, teaching me why, even if my brain couldn’t tell my body to resist, why I might want to use mind over matter to try to.

I had body-disconnectedness for a long long time and walked at about age 2, but crawled later at around age 3-4. I ran on my toes like a ballerina (perhaps that and spinning was where the idea came from that dance would be good). I could scale anything, was always up trees and whilst I walked into walls I could walk a ropetied between two trees. Using my eyes I was lost. When handled by others I was overwhelmed and couldn’t process them and me at the same time, so it was like being suddenly lost in space. But left alone, I was a born kinesthetic learner. Physical patterning made up for what I couldn’t learn through my eyes. My body, poor muscle tone or not, became my eyes and my eyes tuned into movement patterns became my ears.

I think dance gave me voluntary control over my body. I still ran with my arms flapping about or pulled up like a begging pup to keep them out of the way. But I can use my body well now as an adult, even though I slump and struggle to stay sitting with good posture and I certainly prefer to sit on the floor or lay down if I want to relax. Chairs and relax don’t go together.

Even more confusing was that in late childhood, I’d come to understand interpretive language at around age 9-11 which resulted in a lot of expansion but also more emotional pressure than I could stand and around age 13 not long after having a mania/anxiety related obsession with trying to shake my hands off my wrists and making my brain rattle through head shaking, I had a sort of emotional breakdown and my body went rigid and I was miles away from my body and mind. I went through a regression for some months, ended up out of school, got sent up to the countryside to recover and returned, in a daze, progressively getting my body and mind back by age 14 a few schools later.

I couldn’t associate this physical rigidity with the rag doll aspect but understanding that someone with poor muscle tone (hypotonia) can also go through an episode of Catatonia brought on by a severe untreated mood and anxiety disorder, helps me understand the interactions of the two.

Today I’m a happy person who can identify self with body and whilst the messages are slow and I have visual and auditory perceptual issues, I’m very well adapted and successful as an artist, writer, composer. I have an IQ apparently just under 70, putting me in the mildly mentally retarded range but also have an honors degree and a post graduate teaching qualification. So the message is never presume there’s nobody in there behind a stiff, rigid, catatonic presentation, nor behind one which is a floppy rag doll blank stare with visual perceptual processing delayed and that look of meaning blindness. Similarly, just because someone additionally plays ‘games’ in an attempt to explore proprioperception, organize their processing or has involuntary noises, actions or emotional responses shouldn’t convince you they’re nuts. Always presume competence. You may just help someone surprise themselves, and you.

Daniel is thirty-five, has autism, and does not speak. For fifteen of his years, Daniel lived in an institutional setting presumably because he became increasingly difficult to manage at home; and appropriate education and community services were scarce. To anyone who is unaware, institutions are large, usually rural, congregate settings that at one time warehoused tens of thousands of citizens deemed “mentally defective.” People like Daniel were managed and controlled whenever necessary, and, if determined educable, were provided rudimentary schooling. If deemed simply trainable, menial and repetitious tasks were prescribed in the hope that some would acquire fundamental trade skills.

But Daniel, like the last of those to be “de-institutionalized,” bucked the system. Unwilling to relinquish their spirit, and clad with an iron will, such individuals were labeled as “severe behavior problems” for possessing the audacity to rebuke the standards. They would not complacently comply but, instead, asserted their right of refusal. So, indeed, stalwart Daniel came with a long history of which I, purposefully, knew precious little. Not that it mattered; things would be different once he met me, I was certain, I thought to myself as I ascended the narrow staircase to Daniel’s second floor bedroom. After all, I had been dubbed the “autism whisperer.” I was, in fact, equipped with a communication board, a QWERTY-keyboard arrangement of the alphabet in a wooden frame that I intended to offer Daniel in case he wished to type his pent-up thoughts and musings. And, without being informed, I had already sensed the emotional longing Daniel held for his mother—not because she had passed, as I initially thought, but because of a detached relationship.

However my preconceived vision for an instantaneous brotherhood with Daniel was quickly cast aside. As I cautiously made my way to his bedroom, I felt overwhelmed with anguish. There, before me, lay Daniel, scruffy-bearded, slight and sinewy, and wracked with physical and emotional pain—intuitively, I just knew it. As I slowly, carefully introduced myself, my portable keyboard clutched in one hand, I inched my way toward Daniel, prostrate among the disheveled bed linens. I told him I believed that he was intelligent—I could tell just by looking at him—and that I desired to help his staff see it just as plainly. I wanted to create a shift in their understanding, I espoused as I displayed the keyboard, to illuminate the truth and to dismantle longstanding myths. Daniel appeared to take it in. “May I sit here?” I asked as I tentatively perched on the edge of the mattress.

Daniel snapped. He cried out, slapped his head, sat up to swing at me, and kicked at me from under the sheets. “Okay, okay. I get it. I’ll leave,” I assuaged him. “I’m sorry you don’t feel well. I’m come back to say good-bye before I leave,” I said as I backed away and returned downstairs. So much for the autism whisperer, I felt stung and was left wondering where I went wrong. This gentle, unobtrusive approach was previously successful with countless others, and it wasn’t like Daniel wasn’t expecting me—his staff had prepped him for my visit all day.

The narrow, L-shaped living room adjacent to the staircase was just large enough for me to sit with the house supervisor and Garrett, who was still on-shift. I suggested we turn off the television so that we could commune without distraction and so that we could be clearly overheard by Daniel listening upstairs. I acknowledged that I hadn’t exactly been given a warm reception but that it was important to maintain our focus on presuming Daniel’s intellect within, to interpret “behaviors” as communication, and to interact with Daniel with a belief in his full competence. It was bound to be a process that would play out over time but establishing safe and trusting relationships was the key. Afterwards, as I said my farewell, I stood in Daniel’s doorway to tell him that I’d hoped he had been listening, which he almost certainly had been.

Two weeks later, I was scheduled for an official consultation meeting during which I would make leading inquiries of those who knew Daniel best in order to craft a plan of recommendations to Daniel’s team. Prior to our gathering in a private room at the local library, I stopped by Daniel’s place again. This time Daniel was downstairs, lying on the sofa. I sat across from him and, once more, gave him my spiel about his intelligence and the change I envisioned. In response, Daniel reacted strongly: yelling, slapping his head, striking out at me, and stripping down his pants and underwear and throwing them in my direction. (I later learned when he does this it means “go away”—no kidding!) Daniel’s communication that he didn’t want to hear what I had to say was clear and direct.

On the way to the library, I got on to processing my now-two encounters with Daniel, both of which were very similar. When gathered in our meeting room, Spencer, another staff person, requested to discuss Daniel’s refusal to shower, his dislike of cold water, and why he urinates in bed but won’t get up to change. I added these areas to my mental agenda which was already preoccupied with deconstructing Daniel.

The youngest staff member in attendance, Kyle, was twenty-two and, despite his youth, he was seasoned in working with kids with autism at a campground for years in summers prior. His approach to interacting with Daniel was one of unconditional acceptance, patience, and respect. He shared that he had used a keyboard identical to mine except with bold letters spelling YES and NO on the reverse. When Kyle asked Daniel to make choices using the keyboard, Daniel would do so; his actions on the follow-through verified the authenticity of his decisions. On a couple occasions, Kyle said, he gave Daniel a multiple choice for meal preparation: select “C” for chicken, “H” for hamburger, or “S” for sandwich. Daniel, again, followed through accurately. Not only was this profound, knowing what I knew about Kyle’s relationship with Daniel, I wasn’t surprised. Most curious was that Kyle contended Daniel wouldn’t do this when anyone else was watching.

Taking my experiences with Daniel into account with the background information shared with me, here is my most respectful speculation for decoding Daniel’s autistic hieroglyphics:

• Daniel’s dislike of showers and cold water: In congregate, same-sex settings, such as prisons, rapes often occur in shower rooms. Those who do not speak make for the most likely victims for obvious reasons (they can’t tell). Further, in institutions, cold water showers and tub baths were sometimes enforced as behavior modification techniques.

We might speculate that Daniel holds deep-seeded trauma for one or both instances. We may never have proof but we can explore ways to make bathing a pleasant experience through setting the water temperature where Daniel requires it, and using inviting scents and soothing music to calm and quell any anxiety.

• Daniel’s disrobing: This, too, is a clear communication. Why not just take off your shirt? Or why not take off your pants alone? He’s doing neither; instead, he’s leaving his shirt on, taking off his pants and taking off his underwear. In processing this with Daniel’s team, I asked one male staff member to explain what would happen if he did the same thing. “People would be shocked,” he admitted. “Yes,” I said, “people would be shocked.” There’s a certain shock value in exposing your genitals to those unsuspecting. It has a tendency to repulse and socially isolate others. But this is the intent—to keep others at a distance. What Daniel doesn’t know (and what I didn’t share with him) is that after my many years in this field I’ve seen it all, and there’s nothing he could do that would shock me.
• Daniel’s intentional urinary incontinence mornings upon awakening (he knows how to use a toilet and hadn’t done this prior to moving) and subsequent refusal to clean up: When someone wets themselves, there’s a release; but it’s also warm and it has a distinctive scent. Kyle also added that mornings are when Daniel seemed most likely to be in a depressed mood and would sometimes weep. Even though the institution may have been imperfect, it was still Daniel’s home for fifteen years. Jamar, a current staff team member, had also worked with Daniel at the institution. He asserted that the environment there often had an odor of urine.

We might speculate that Daniel is homesick upon awakening and realizing he’s in the “new” place. Like many of us, those with autism are likely to link visuals and aromas in memory to specific places and events. I believe that Daniel is still going through a transition process, and urinates (refusing to change at first) in order to call up memories of home. His staff concurred and Ann, a nurse, shared that at the autism summer camp (at which Kyle also worked), kids were more apt to cry and feel homesick first thing in the morning. Resolve requires our compassionate patience and understanding.

• Daniel’s selectivity for beginning to demonstrate a proclivity for communication with Kyle but holding back when others are present: This one’s easy. It’s all about the quality of the relationship, and the degree of trust and safety within that relationship. Clearly there’s the inkling of something significant developing in a partnership Kyle has established with Daniel. Transferring this advantage by cultivating similar relationships with Daniel’s other staff is the trick. This may be easier said than done depending upon each individual staff person and how they approach their job (and Daniel).
• Daniel’s apparent disdain for me (although after the consultation we went back to the house and Daniel gently touched my arm—a good sign): Let’s remember that for his entire life, people around Daniel believed him to be void, vacant and unaware. I have known people who have stopped trying to prove otherwise because their efforts go undetected and unobserved. Instead, behavior management and control becomes the norm, and age-inappropriate activities (in keeping with one’s supposed mental capacity instead of their chronology) become standard. A vicious cycle ensues in which someone like Daniel eventually becomes what others believe, reflecting back what is projected upon him. Eventually, it becomes easier to play the game, feign helplessness, and exert some measure of control by manipulating people, the environment, and perpetuating learned helplessness (feed me, dress me, bathe me, clean me up).

Enter Stillman, who comes in talking about how he’s going to shake things up and you’ve got a threat. In hindsight, I suspect Daniel doesn’t want to hear how smart I think he is because he doesn’t want me messing with the good thing he’s got going. I’m liable to blow his cover. Not only is it easier to pretend to be mentally retarded, it’s safer. Once true intellect is established, the bar is raised and adult responsibility is expected. For someone who’s become accustomed otherwise, that’s way outside their safety zone—a terrifying prospect, in fact.

Still, this is not beyond Daniel. He’s already showing glimmers of his true reveal by communicating with Kyle in ways that are unprecedented, just not in front of the others so they’ll expect it too. Besides, they haven’t earned it. Developing safe, trusting, respectful and reciprocal relationships with Daniel that presumes his intellect is the real challenge of the team. It will be a process that will take time, maybe even years, but with a dedication and a perseverance to match Daniel’s own attributes, they just might pull it off.

I’m a strong proponent of the principle “prevention instead of intervention.” Not only do we wish to educate, support, accept and integrate people with autism fully and as early as possible, we also need to practice “prevention instead of intervention” with parents, caregivers, educators, law enforcement and the medical community. What does this mean? In the midst of applying a maze of treatments, therapies, medications and methodologies, it is imperative that we perceive the autistic one as capable and competent. In other words, it is our conduct that shapes the future for each child with autism and how he or she perceives their place in the world. In my work as a consultant, I often observe what borders on psychological abuse in the manner by which parents, grandparents, educators, therapists, doctors and others describe the one with autism in front of them! To some, the child is a patient…a subject…a “behavior problem”…a thing.

Imagine having an intellect fully intact, having limited means to communicate such, and enduring constant put-downs and complaints about how difficult you’ve made others’ lives—simply by being who you are. It’s no wonder that so many with autism grapple with anxiety, depression, and post-traumatic stress disorder—mental health experiences we’ve created and could have avoided if only we changed our behavior.

Additionally, when we don’t presume intellect and perceive people with autism as perpetual children, we lower our expectations of them instead of raising the bar and challenging their intellect. Those who are anxious, depressed or suffering from PTSD may acquiesce and find complacency in being babied—it’s easier and takes less energy. Still others engage a game of one-upmanship with opposing neuro-typicals by creating regularly explosive drama as a divertive amusement—this is reflecting back what others project. And then there are those whose identity is so closely aligned with an overprotective parent that they become co-dependent to the point of being unable to make decisions for themselves—progress is developmentally retarded, owing to inextricable enmeshment in the parent-child relationship. By not presuming intellect, we are creating an autistic culture of learned helplessness. This will make the difference between forthcoming generations of productive, tax-paying citizens or citizens who tax the system as “burdensome.”

We may use what is considered standard achievements (a job, a place to live, a relationship) as the measuring stick of success for neuro-typicals. In autism, there are many variables that conspire to hinder what gets measured for success such as acute sensory sensitivities, delays in thought-processing and speech articulation, or challenges in motor coordination. This makes the concept of traditional higher education or viable employment inequitable.

There have been many famed individuals and creative thinkers who have made significant contributions to our culture and who have been rumored to be on the autism spectrum (likely with Asperger’s), Charles Schultz, Thomas Jefferson, Vincent Van Gogh, Alfred Hitchcock and Bill Gates among them. The argument may be that they are all indeed “high-functioning.” But in autism, the perception of “high” and “low” functioning is limited only to the physical if we presume the cerebral intact. This will require us to think in a manner that is inspired and to re-envision employment opportunities that will build upon individuals’ unique areas of expertise; focus upon interesting, detail-oriented work; identify quiet, gentle environments; not be deadine-specific; and use virtual online employment or self-employment options.

Historical job opportunities for people with disabilities tend toward those no one else wants (or jobs others will only work temporarily). It’s degrading to be thought of exclusively in terms of janitorial clean-up when innovative thoughts are begging to burst forth. Helen Keller presented outwardly as among the most severely impaired yet she was brilliant for what she gained the world. Gathering together in support, seeking communication alternatives to speech, and making compassionate accommodations for each individual with autism—regardless of what their level of functioning purports to be—is not only necessary, it’s imperative. It’s what will distinguish progressive, innovative productivity from learned helplessness.

It occurred to me that autism is much like my neighborhood’s displaced avian: something that escapes singular definition; something unique, mysterious even; something in jeopardy of being examined in calculating and clinical ways; and something open to broad interpretation—if it’s even recognized at all. Imagine being the parent of a child newly diagnosed with autism, and feeling an overwhelming mix of similar thoughts, feelings and emotions. Not only might you be grieving the loss of the child you had envisioned your son or daughter may become, it now becomes apparent that the vision requires permanent alteration in ways previously unexpected and inexperienced. To suggest that this is the precipice of confusion would be understating the obvious for countless families who are finding themselves in these circumstances every day.

The confusion about autism stems from the very sector that purports to serve it. Why? Because no one in autism can seem to agree on much of anything, from what causes it in the first place to programs, treatments and interventions. Let’s face it, autism is an industry. It’s a multi-billion-dollar industry. Everyone’s coming at it from a million different directions because they can. Just like the unusual bird, autism is wide open to argument and debate over its very being and what exactly to do about it. And—despite the contentions of some—not only is there no cure for autism, there never will be. Autism has become the “new” cancer—it is a burgeoning industry, still in its infancy, upon which thousands depend for their livelihood (yes, including myself). And it is here to stay in perpetuity. Think about it like this: In the many years that Jerry Lewis has hosted an annual MD telethon, are we really any closer to “curing” Muscular Dystrophy?

On a recent autism consultation, I surmised that one young four-year-old experienced proprioception, that sense of being disconnected from one’s own trunk and limbs in space. One of my recommendations was that the family should engage the boy (and his brother, too) by moving in water to awaken those dormant neural pathways and have fun like two young brothers should over summer vacation. Mom’s response was to immediately lament the discontinuation of funds for aqua-therapy—I thought, “Wait a minute! Who said anything about “aqua-therapy?” I was talking about finding a community pool, the YMCA, a plastic wading pool in the backyard—even doing frog-kicks in the bathtub. Do you see the difference in how the autism industry has conditioned many parents to think?

Frankly, I’m weary of hearing about how exceptionally costly it is to raise a child with autism or that the more therapy and programming you bombard a kid with, the better off they’ll be. Young parents of kids newly diagnosed are becoming smart about autism advocacy. They are savvy enough to do their own online research. They’re connecting to other parents via Internet message boards, listservs, and chat rooms—comparing and contrasting. They’re getting second and third opinions about options, and they’re challenging an antiquated service system that was never designed or intended to address the tremendous influx of little people with a new and different way of being. Not wrong…not even bad, just different. This is progress! I’ve been in this field for over 20 years; anytime I’ve ever seen positive, proactive change occur (such as legislation), it’s been because of passionate parents dedicated to bucking the system, demanding that the system grease their squeaky wheels now, not yesterday. And you know what? It works.

Kids are kids, and children with autism are no exception. Please don’t misquote me—I’m not suggesting we do nothing, I’m saying how we do what we do with our children is what makes the difference. Naturally, embedded within the flow of everyday, typical activities that make it fun and interesting to learn and play. (Ultimately, it’s cost effective too!) Instead of working on them, let’s work with them—and their families who love and adore them—to clear up the confusion about autism. In a way, it’s a lot like my local rooster or parrot or whatever the heck it is. While I may not know precisely what it is, the important thing is I know it’s still only a bird. And isn’t that really all that matters?