Chapter Eight:  Self-Injury

            We follow the same routine each time the head-banging occurs.  It can happen suddenly, like a flash of lightning, or it can develop gradually over the course of a day until Sam finally explodes.  Even if I’m in another room, I’ll recognize that familiar sound:  BAM! BAM! BAM!  When Sam was younger, I would try to rush in and prevent him from hurting himself.  But that only made things worse, sending Sam into an uncontrollable rage.  Directed at me!

            So now I stand back while Sam bangs his head against the wall.  I try to take a Zen-like attitude.  That is, I try to go to a different place in my mind, to transport myself mentally to a different realm where this is not happening.  To achieve a state of dispassion.  I’m getting better all the time.  Sounds cold, I suppose.  But without the ability to disengage in these situations I don’t know how parents of autistic children could keep their sanity.

            “It’s okay, Sam,” I say.  “You’re safe.  You’re at home.”

I wait until Sam stops banging his head, until he reaches the quiet place that comes after the storm.  Afterward he’s calmer and usually contrite. Sometimes his body goes limp, as though he’s just experienced a seizure, or a jolt of electricity. By this time he’s usually bloody.  He prefers to hit the top of his forehead on the corner of a wall, which leaves a nasty gash that, when healed, will become another battle scar.  As if he doesn’t have enough already.

As soon as I can get his attention, Sam follows me down to the Yellow Submarine.  I draw him a bubble bath in his Jacuzzi tub while he tells me how sorry he is.  “Did I hurt anyone?” he’ll usually ask, not fully aware of what has just transpired.  Again, it’s like a seizure in that respect. Most of the time the answer is no, he didn’t hurt anyone else.  When he sinks into the water, I can see the last of the tension drain out of his body.  He relaxes in the bubbles, while I pour warm water over his head, washing away the blood and plaster. If the gash on his forehead is deep, I’ll wash it with a Betadine solution and cover it with a bandaid to keep it clean. Otherwise I leave it to heal on its own.

While he soaks, I’ll clean up the blood, wiping down the floor and the walls upstairs.  Plaster repair, if necessary, has to wait until another day.

“I’m sorry,” Sam will say.

“I’m sorry, too,” is always my response.

When I ask what happened, why he hit his head, he goes silent.

            If anything, he’ll say, “Don’t ask.  It’s just my impulses.”

            After his bath, he usually wants to be by himself, to watch the Weather Channel or listen to his music.  As though nothing had happened. No big deal.

            Though I’ve tried a hundred times, I’ve never been able to get Sam to really talk about why he bangs his head and what the banging accomplishes. I wonder if he even understands why. .Just his impulses, he’ll say.  Nothing more. 

Why do so many autistic people intentionally hurt themselves?  Some bite their arms; others pull out their hair.  What’s the deal?  

To find an answer I launched an extensive online search, reading every blog, article, and interview transcript I could find of autistic people talking about self-injury.  Some patterns began to emerge. I say patterns because, like any group of people, no two autistic people are the same.  But I did find some agreement, some commonalities.  For example, many people commented on how their reasons for hurting themselves not only varied but evolved over time.  I saw this same phenomenon in Sam, whose head-banging has changed with age and circumstance.

            When Sam was little, he would rock himself to sleep, hitting his head on the sides of the bed.  Sometimes when he took afternoon naps he would bonk himself into a trance-like state.  Finally we had to put cushions on both sides of the bed frame, or he would develop bruises or scrapes on his forehead.  A precursor of what was to come.

In her Ballastexistenz blog, Amanda Baggs refers to similar behavior on her part as “chasing oblivion.” “When I was a kid, I really didn’t want to exist,” she explains.  By banging her head she could approach unconsciousness, which seemed like non-existence.  Only later did her head-banging evolve into an “impulsive action” that she could only  sometimes control.

            Like Baggs, Sam’s head-banging seemed to become an “impulsive action” as he got older.  When he banged his head it would usually come in one of two situations: when he wanted attention; or when he was overburdened by tension or anxiety.  In fact, the first time Sam banged his head on the wall, I was upstairs watching television and heard him call out to have me come down and find something for him.  When I said just a minute, he started banging his head on the stairway.  He wanted me NOW!  I came down to find him bloody and blaming me for not reacting soon enough.

            Still today Sam will resort to head-banging if he wants, but isn’t getting, our full attention.  For example, if Sam’s mom and I are talking intensely, or if we’re paying more attention to someone else (especially one of his sisters), Sam might very well hurt himself as a way to return to the center of attention.

            Other autistic people have written about this need for attention.  “Sometimes I scream and head-bang just to show how handicapped I am,” writes Sue Rubin in “Killing Autism Is a Constant Battle.”  “Heroes demand worship; autistic people demand attention.”

            That’s Sam, in a nutshell.

            Even so, tension remains Sam’s primary trigger.  On a day he’s feeling tense, or “all eaten up” (as he says) by anxiety, I do my best to talk him down.  I slow myself down and spend quiet time with him, chatting or walking, whatever he wants to do.  Sometimes it works; sometimes not.  Some days, it seems, he just needs to bang his head to readjust his electrical impulses or his brain chemistry, whatever head-banging accomplishes for him.

            Most autistic bloggers agree that tension can lead to self-injury.  Donna Williams includes head-banging in “An Outline of Language in ‘My World,’” an appendix to her autobiography, Nobody Nowhere.  She explains the purpose of her head-banging: “To fight tension and to provide a thudding rhythm in my head when my mind was screaming too loud for me to be able to hum or to repeat a hypnotic tune in order to calm down.”

            This brings me to a fascinating concept. Williams and many of the autistic bloggers discuss self-injury as a kind of embodied language. A form of communication that provides a second language for autistic people, much the same way that American Sign Language provides a second language for the Deaf community.  So that physical behaviors (or performances, if you will) become linguistic acts, both expressing and creating meaning for those who understand the language. That’s the catch, of course.  Most neuro-typicals don’t understand this embodied language.  It takes an enormous amount of time and patience for parents and teachers to be able to “translate” expressive behaviors such as hand-flapping and head-banging.  I’ve lived with autism over a period of almost 30 years, and I can’t claim to be more than a novice at translating autistic behaviors.

            Moreover, many autistic people say that, in moments of frustration (or confusion), they must rely on an embodied language to complement or even replace speech. Looked at from this perspective, it would be counterproductive for neuro-typicals to try to eliminate these expressive behaviors.  If you take away the behaviors, you take away an important (sometimes the only) form of communication.  You deny the autistic person the linguistic tools to express him/herself.

            Michelle Dawson alludes to many of these issues in a post from her Autism Crisis blog.  She recounts being asked in a documentary why she hurt herself.  “What I said …  was that it (hurting myself) was my vocabulary,” she writes.  “Then I said that I’d worked hard all my life to learn language.  This was very, very difficult and took pretty much all my resources.  But I learned, and I learned two languages.  Then I found out this language thing didn’t work; I was not good enough at it; I somehow did it wrong.  My very accurate words weren’t heard.”

“I hurt myself to re-establish some form of accuracy,” she continues.  “So while it may seem that I’m frustrated, that isn’t the case.  Confusion, yes to some degree.  But there is an essential need to re-establish, after repeated failed communication, the existence of accuracy, or at least the possibility of accuracy, in order to continue to function at all.”

            Certainly, Sam has these same issues with communication, despite being verbally adept.  Sometimes, out of confusion or whatever, he’ll be unable to communicate his feelings.  Here’s a typical scenario.  We’ll be driving somewhere, and on the way Sam will change his mind about going.  Instead of saying he doesn’t want to go, he’ll sit in his seat, sullen and conflicted.  Finally he’ll reach over and either honk the horn or hit me.  Sam has a history of this behavior.  Throughout junior and senior high, “Talk, don’t touch!” became a mantra that all Sam’s teachers repeated.

            Easier said than done for someone who communicates as much by touch as by speech.

            Emotions can be doubly difficult for Sam to express.  This is especially true when he’s sad or depressed.  Once repressed, these emotions can cause anxiety and lead to head-banging.

            Like most people with disabilities, Sam has low self-esteem and an acute sense of his own failures.  Largely this is a reflection of how other people react to him, especially strangers.  He’s perfectly aware of the stigma attached to disability.  And when he fails, he suffers the slings and arrows of his own bad feelings about himself.

             For example, just recently Sam and I drove to a convenience store to buy him a soft drink.  Sam opened his car door into the vehicle parked next to us, making a tiny nick in its paint.  The owner of the vehicle made a big stink, demanding to see my insurance card and yelling at Sam.  Since then, whenever we drive to a convenience store, Sam refuses to get out or even open his door.  He monitors himself closely because his sense of failure is so intense.

            Diagnosed with a mood disorder, Sam has frequent bouts of depression.  To make matters worse, he won’t talk about why he’s depressed or what we can do to help.  He can’t get the words out.  Instead, he’ll punish himself.  If he drops or knocks over something, he’ll bonk his head on the nearest object.  Depression makes any kind of communication difficult.

            The more depressed Sam is, the more fragile he becomes.  When he’s in one of these moods I go out of my way to treat him with love and kindness.  Yelling at him would be the worst thing to do.  Sadly, it was during his high school years, when he battled depression daily, that Sam was yelled at most often.  Yelled at by teachers, counselors, job coaches, and others.  What did the yelling accomplish?  Nothing.  Sam would hurt himself or strike out at others.

            Amanda Baggs writes about being yelled at under similar circumstances. The yelling produces a kind of dissonance or mental static that results in a failure of communication. Predictably, the yelling also triggers head-banging.  Baggs relates one incident where, after repeatedly asking and failing to obtain a particular piece of information from someone, she becomes frustrated and starts banging her head.  “When I started banging my head, she started yelling, ‘Listen to me!  Listen to me!’”

             She continues:  “And the whole time I was thinking, “I am listening to you, why the hell do you think I’m overloaded, lady?  Now stop screaming at me or I won’t be able to quit hearing you long enough to stop this.’”

            You can begin to see the complexity of this issue.

            Let’s go back to the concept of embodied language.  Is self-injury an expressive embodied language, or is it only a reaction to external factors?  And to what extent can or should self-injurious behaviors be eliminated?

            For Sam, head-banging can be both a language and a reaction.  If he’s not getting enough attention, or if something spills on the floor, he may react by banging his head.  In this case his head-banging is clearly a reaction to an external event.

            On the other hand, if he’s confused, or if he’s having bad feelings about himself, he’ll sink into a nearly catatonic depression.  On those days there’s nothing I can do to bring him out of his depression.  He’ll actually lose his power to speak, even though his negative body language makes it clear how he feels.  He’ll sit, silent and sullen, until an internal or external trigger sets him off.  Then he’ll head for the nearest wall and start banging his head.

            BAM!  BAM!  BAM!

            An embodied language?  I suppose, because in those situations banging his head becomes the only way he can express himself, the only way he can break the negative mood and move on.

            And this is precisely what happens.  After he bangs his head, Sam begins to relax.  He not only regains his power to speak, he resumes chatting as though nothing out of the ordinary had occurred.

            Here’s the rub.  If head-banging can be considered a linguistic act, then is it fair for me to want to eliminate that behavior?  Probably not, even though I would give anything to stop his head-banging.  I mean, head-banging can be lethal, especially for someone with a shunt.  And of course I do try, encouraging him to change languages and instead talk about his feelings.  I beg him to use words.  To talk about whatever’s bothering him.

            Writing this, I’m struck by the futility of my actions.

            I say this because head-banging isn’t a choice, it’s a need.  On the bad days Sam needs to bang his head, period.  Nothing I do will change that.

            So when it happens I’m left standing on the sidelines watching, having to make peace with the inevitable.  I comfort Sam while he bangs his head, telling him that everything will be okay, that he’s safe.  I never know if any of this is true, of course, but I say it anyway because I have nothing else to say.  What can I give him but empty words of comfort?  Once he’s finished, I bath him and wash away the blood, chatting and pretending, like him, that everything’s just fine.

            Usually the next day I repair the walls.  Over the years Sam has put many a hole in the drywall.  He’ll watch, listening to his portable CD player, while I spread a drop cloth and arrange my tools:  spackling compound, putty knives, and nylon mesh.  For cracks and small indentations, the two-inch putty knife will work.  Larger holes require the four-inch putty knife and a layer of nylon mesh, over which I spread thin layers of spackling compound top to bottom, side to side.  Next day I sand and apply another thin layer, which after another 24 hours will be sanded again and finally painted.

            Sam doesn’t comment on the patches, which if you look close enough, remain forever visible on the walls, like the scars on his forehead.

            But the walls sometimes make Sam think about himself.  After watching me plaster, he’ll sometimes go into the bathroom and look at himself in the mirror.  It’s the only time he ever looks at himself in a mirror.  Ever.

            “How do I look?” he’ll ask, pulling a baseball cap down over his forehead. 

            “Good!” I say, whether or not it’s true.

            “Are you sure?  Can you see anything?”

            “Not a thing,” I say.

            And we put the episode behind us, like all the others, never to be mentioned again.

*

Chapter Two:  Contesting Autism

            Like any parent of an autistic child, I wanted to learn all I could about autism.  Soon after Sam was diagnosed I did research in the library and online, looking especially at official government and organizational websites.  Initially, I assumed autism resembled other disorders, with specific, well-defined causes, characteristics, and treatments.  What I discovered was anything but well-defined.  The more I read, the more confused I became by the dizzying array of generalizations about what autistic children can and can’t do.

            These official websites agreed on the most basic definition of autism:  a complex developmental disorder involving brain chemistry that usually manifests by the age of three and that affects boys four times more than girls.  The most recent statistics compiled by the Centers for Disease Control suggest that 1 in every 150 children will be diagnosed with an Autism Spectrum Disorder.  The Autism Society of America, which calls itself “the voice of the autism community” (a claim that is rejected by many autistic bloggers and advocates), argues that autism is “the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills.”  Most prominent on the ASA homepage, as others have pointed out, is the pitch for viewers to join ASA and make a financial contribution.

            The word “normal” appears frequently on the ASA and other official websites, as if that word actually meant anything.  What’s normal?  To whom?   Fact is, the meaning of the word normal is not a given, is not imminent.  Far from it.  The meaning of normal depends on a context, a frame of reference that has to be constructed.  And who does the constructing?  People.

If you think about it, you’ll find that normal is a slippery slope.  What’s normal to me might not be normal to you. Actually, I’m not sure that any of my extended family would be considered normal under any definition of the word.

            But my favorite statement on the ASA website, under the “Living with Autism” heading, offers advice to parents on how to cope:  “The demands of raising a child with autism are great, and families frequently experience high levels of stress.  Recognizing and preparing yourself for the challenges that are in store will make a tremendous difference to all involved, including the parents, siblings, grandparents, extended family, and friends.”  Stress?  Challenges?  You think?  And as far as finding siblings, grandparents, extended family, and friends who want to be involved with Sam, I’m still looking.

            Autism Speaks, another nonprofit website co-founded by Suzanne and Bob Wright, adds the following:  “Autism impairs a person’s ability to communicate and relate to others.  It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines.  Symptoms can range from very mild to quite severe.” 

            That is, autism is a spectrum disorder that includes a wide variety of symptoms, behaviors, and abilities.  This variety makes it extremely difficult to predict outcomes and just about impossible to foretell the future of any particular person affected.  Autism spectrum disorders range from so-called “Higher Functioning” to so-called “Lower Functioning” in this order:  Asperger’s Syndrome, Pervasive Developmental Disability, Autism, Childhood Disintegrative Disorder, and Rett’s Disorder.  The movie Rain Man popularized Asperger’s Syndrome, which is often associated with savant skills in math, music, and art. 

Temple Grandin, who has Asperger’s, has become something of a national spokesperson for the disorder.  Grandin teaches Animal Science at Colorado State University and has written several books on autism.  Some of her theories comparing the way autistic people learn to the way animals learn have not been well received in the larger autism community.

            The Centers for Disease Control in Atlanta, Georgia, describes autism spectrum disorders as a “group of developmental disabilities defined by significant impairments in social interaction and communication and the presence of unusual behaviors and interests.  Many people with ASDs also have unusual ways of learning, paying attention, or reacting to different sensations.” 

Okay.  Unusual behaviors and interests.  Unusual ways of learning and paying attention.  Again, the generalizations don’t have much predictive power in the individual case.  I didn’t need the CDC to tell me that Sam exhibits unusual behaviors and interests.  So do I, for that matter.

            What causes autism?  The official websites tend to agree that a complex interaction of genetic and environmental factors triggers autism.  The CDC website makes the case most succinctly:  “Family studies have shed the most light on the genetic contribution to autism.  Studies of twins have shown that in identical twins there is about a 75% rate of both twins having autism, while in non-identical twins this occurs about 3% of the time.  The inheritance pattern is complex and suggests that a number of genes are involved.”

            The CDC lists other factors associated with an increased risk of autism, including medical conditions such as Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU).  The Center for the Study of Autism in Salem, Oregon, adds another category to their list of associated risk factors:  viruses.  They include the cytolomegalo virus and certain viruses associated with vaccines, especially the MMR vaccine.  This last comes as something of a surprise, since most official websites discredit the vaccination conspiracy theory supported, primarily, by parent groups. 

            However, the vaccination theory may be revisited after the U.S. Congress passed the 2006 Combating Autism Act.  Cure Autism Now, another nonprofit advocacy group, successfully lobbied for the Act, which was signed into law by George W. Bush on Dec. 19, 2006.  The Act will increase funding for autism-related research at the National Institutes of Health from $101 million in 2006 to $132 million this year and to $210 million by 2011.  Among other initiatives, the NIH plans to investigate the possible role of neuro-toxic compounds such as pesticides and mercury in causing autism.

            Most cases of autism are diagnosed by the age of three or four, according to official websites.  Early signs of autism include not speaking, gesturing, or making eye contact by 18 months of age, as well as repetitive speech or actions.  The Cure Autism Now website adds the following sign:  “Unusual reactions to the way things look, feel, smell, taste or sound.”  Unusual reactions?  Okay.

            Official criteria for diagnosing autism can be found in the Diagnostic and Statistical Manual of Mental Disorders, published and updated periodically by the American Psychiatric Association.  The current edition, the DSM IV TR, groups diagnostic criteria into three general categories:  social interaction; communication, and repetitive and stereotyped patterns of behavior.  But to diagnose a patient using the DSM IV TR criteria, a medical professional has to first engage in a little mixing and matching.  Let’s take a look at how this rather clumsy diagnostic instrument actually works.

            A diagnosis of “Autistic Disorder” requires a medical professional to identify, “A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):”

1. qualitative impairment in social interaction, as manifested by at least two of the following:

•  marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.

•  failure to develop peer relationships appropriate to developmental level.

•  a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest).

•  lack of social or emotional reciprocity.

2.     qualitative impairments in communication as manifested by at least one of the following:

•  delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).

•  in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.

•  stereotyped and repetitive use of language or idiosyncratic language.

•  lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level.

3.     restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

•  encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.

•  apparently inflexible adherence to specific, nonfunctional routines or rituals.

•  stereotyped and repetitive motor manners (e.g., hand or finger flapping or twisting, or complex whole-body movements).

•  persistent preoccupation with parts of objects.

To the above, the DSM IV TR adds the following two items:

            First, delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:  (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

            Second, the disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder (separate diagnostic criteria for these and the other disorders on the Autism Spectrum are included in the DSM IV TR).

             Considered separately, each of the above criteria seems reasonable enough, if predictable.  It’s the mixing and matching that I find problematic. What if I present with only five items (instead of six) from categories (1), (2) and (3)?  Can I be diagnosed with autism disorder?  Or if I present with only one item (instead of two) from category (1), but two items from categories (2) and (3)?  Or just one item from each of the three categories?  You see my point.  As a diagnostic tool, the mixing and matching seems overly fluid, even arbitrary.

            In addition, the criteria strike me as overly general or, in the language of the DSM IV TR, stereotyped.  For example, virtually every adolescent male I knew growing up in my small Midwestern town had problems with social interaction, communication, and repetitive behaviors.  We weren’t very social, we didn’t talk much, and we would spend hour after hour engaged in repetitive activities such as throwing a baseball against a wall or shooting hoops.  Every day, inside or outside, we would repeat the same activities, without much interaction or communication.  According to the DSM IV TR, we might have been diagnosed with autism disorder.  My point here is that the criteria are so general that any diagnosis comes down to a judgment call.  An opinion. 

            Every official website includes a list of possible behaviors that characterize autistic people.  They fall into five main categories.  The first category involves perseverative, repetitive, and self-stimulating behaviors, such as rocking, clapping, tapping, and hand flapping.  The second category consists of self-injurious behaviors, such as biting, head-banging, and pulling out hair.  The third category involves asocial behaviors, including not interacting, making eye contact, or understanding the feelings of others.  The fourth category contains a range of sensory sensitivities, such as painful aversion to noise, crowds, and being touched.  Communication problems make up the fifth category.  Here’s the CDC on communication issues:

About 40% of children with ASDs do not talk at all. Others have echolalia, which is when they repeat back something that was said to them. The repeated words might be said right away or at a later time. For example, if you ask someone with an ASD, “Do you want some juice?” he or she will repeat “Do you want some juice?” instead of answering your question. Or a person might repeat a television ad heard sometime in the past.

            Let’s examine this statement. About 40 percent of autistic children don’t talk?  Can’t talk?  Won’t talk?  What exactly does this statement mean?  Where does the CDC get the number 40?  And what about those autistic people who communicate in different ways?  Some, for example, rely on computer-mediated or facilitated communication. Many communicate by e-mail.  Some even have their own blogs and hi-tech websites, complete with a sophisticated mix of text, graphics, and videos.

One of the most prolific autistic bloggers is Amanda Baggs, who launched the Getting the Truth Out website to challenge the propaganda (as she sees it) of organizations like Autism Society of America and Autism Speaks, which are not run by autistic people.  She also writes an equally defiant blog, which she calls Ballastexistenz.  Though incredibly articulate, Baggs does not speak; she relies on computer-mediated communication. There are many autistic people like Baggs who communicate differently but quite effectively.

Even a superstar, supercrip like Temple Grandin acknowledges that it took her a long time to learn how to talk.  It wasn’t that she couldn’t talk; she just had to learn how.   She writes in “An Inside View of Autism” that:  “Not being able to speak was utter frustration.  If adults spoke directly to me I could understand everything they said, but I could not get my words out.  It was like a big stutter.”

            I found perhaps the strangest list of problem behaviors on the ASA website.  Labeled the “most likely areas in which an autistic person may encounter problems with the law,” the list includes the following:

• Bizarre behavior–such as severe tantrums, head-banging, and hand-flapping; these behaviors are sometimes misperceived by others as due to the influence of drugs or alcohol.

•  Inappropriate social boundaries–such as approaching and/or touching strangers.

•  Violating social norms–such as walking in the street, stealing, trespassing, stalking.

•  Property damage–such as starting fires, throwing objects.

The ASA website goes on to say that if autistic people break the law, they should not be incarcerated but continue to receive treatment and education to control future “malfeasance.”

            I made a note to remember this, just in case Sam runs afoul of the law.

            So what about treatment and education?  How are children with autism spectrum disorders treated and educated?  Again, I found a wide variety of treatments, everything from medication, to diet and nutritional supplements, to highly structured educational programs.  The Autism Speaks website lists the most common interventions as Applied Behavior Analysis (ABA), Floortime Therapy, Speech Therapy, Occupational Therapy, Sensory Integration Therapy, Relationship Development Intervention, Verbal Behavior Intervention, and the school-based TEAACH method.           

            Of these, I have the most problem with Behavior Modification, under whatever tired guise it appears.  First, the purpose of Behavior Modification is normalization, to me a problematic concept.  Second, the techniques employed by Behavior Modification professionals are often brutal, self-defeating, and self-perpetuating.  How long before the psycho-social community buries B.F. Skinner?  I couldn’t count the number of Behavior Mod programs inflicted upon Sam by well-meaning (I guess) educators who simply did not have a clue about how to reach Sam.

            One example.  The science teacher (and swimming coach) who declared that what Sam needed most of all was a dose of “tough love.”  After the physical altercation that ensued, he and Sam ended up in the principal’s office.  Repeatedly.  I never did get a chance to ask him how that “tough love” worked for him.  I know how it worked for Sam.  It didn’t.

            Other than a basic definition of autism, the most consensus I found on these websites concerned the relatively short history of the disorder, first reported by Leo Kanner of Johns Hopkins in 1943 about the same time that a German scientist by the name of Hans Asperger described a less severe form of the disorder (Asperger’s syndrome).  Even so, autism as an official clinical diagnosis wasn’t added to the DSM until 1980, when it became (so to speak) a billable, pillable disorder.

            Reading these official websites provided me with a wealth of information, I’ll admit.  At the time I was grateful for the knowledge, but as Sam grew older I became more frustrated because none of this information helped me understand Sam as he experienced his life.  More than anything, I wanted to hear autistic people talk about their lives.  How they experienced the world.  Yet comments from people with autism were conspicuously absent from these websites.  If they were present at all, autistic people (or their photos) were used as medicalized objects to be spoken for by parents or professionals.            Even on a website that calls itself Autism Speaks, we find autistic people objectified and medicalized in the most negative of terms.  For example, on the “Founder’s Message” page we find the following:  “In 2004, our grandson was diagnosed with autism.  Helpless, we watched him slip away into the cruel embrace of this disorder.”

            Well, I suppose, but when we frame autism in such negative terms, what effect does that have on autistic people?  It’s easy to understand why many autistic bloggers consider Autism Speaks a hate group (Autism Diva refers to it as “Autism Stinks,” Rett Devil as “Autism Weeps”).  These websites, taken as a whole, tend to reinforce the worst negative stereotypes about people with autism:  that they are largely nonverbal, retarded, and lacking in imagination and social skills.

            My experience with Sam and his friends told me that these stereotypes were just that:  stereotypes.  I’d hoped Sam could provide me with some insight into how he experienced the world.  And he has, to a certain extent.  Except that fathers and sons have the same kind of issues that mothers and daughters have, so that Sam sometimes can be reticent to answer my questions.  He’ll talk more freely with other people, including my wife, Cindy.  He seems to think I’m prying where I shouldn’t be prying. He’s also learned over the years to be very guarded about his disabilities.  Put bluntly, he resents being interrogated.

            Then, several years ago, a colleague told me to check out the Autism Network International website maintained by Jim Sinclair and others at Syracuse University. ANI refers to itself as an “autistic-run self-help and advocacy organization for autistic people.”  From there I expanded my search and discovered, much to my delight, other websites maintained by and for autistic people.  In particular, I discovered Aspies for Freedom, Autism-Vox, and Autistics.Org, which calls itself the “real voice of autism,” as well as the dozens of blogs written by autistic people posted on the Autism Hub website.  Using insider terms to describe themselves (as auties, aspies, autists), the Hub and other independent autistic bloggers rejected negative stereotypes about autism and challenged institutions and organizations that claimed to speak for the autistic community.  Not that they were a homogeneous group with a monolithic position; they weren’t.  They argued and bickered with each other like any other online discussion group.  But I had found what I was looking for:  autistic people describing their own lives.

            Frankly, I’ve learned more about Sam from these blogs than I have from official websites.  Not that I agree with all the positions taken by the autistic bloggers, some of whom are quite militant.  Still, it’s utterly refreshing to find autistic people speaking for themselves.  What do they write about?  They write about behaviors, about communication, about sensory overload, about friends and relationships.  Mostly, they write about the same things that all of us write about.

            Most of these blogs reject the medical model of autism; that is, autism as disease, disorder, or pathology.  Instead of the “devastating” disorder of Autism Speaks, they define autism as “neurodiversity.”  “Autism is a neurological difference classified as a developmental disability,” writes Michelle Dawson in her Autism Crisis blog.  She continues: “Autism isn’t a disease … any more than femaleness is. Autism involves neurological differences, which are basic and comprehensive.”  She goes on to say that “autistic neurology” isn’t any more or any less valid that non-autistic neurology.  In point of fact, both autistic people and neuro-typicals are able to develop, learn, progress, and achieve, though they may do so in different ways and require different kinds of help along the way.

Even more outspoken is the autistic blogger who calls himself Ventura33.  Ventura33 foregrounds the political dimension of the term neurodiversity, arguing that neurodiversity is both a concept and a civil rights movement:  “In its broadest usage, it is a philosophy of social acceptance and equal opportunity for all individuals whose neurology differs from the general, or neurotypical population.  The term is more commonly used, however, to refer to an ongoing campaign to end prejudice and discrimination against autistic people, a group numbering at least 20 million worldwide.”

For Ventura33 and other bloggers, the concept of neurodiversity equals civil rights.  Why do autistic people need a civil rights movement?  Because their civil rights have been taken away by parents, teachers, and the medical community.   Again, Ventura33:

For about the past half-century, mainstream society has portrayed autistics as tragically defective, lacking even self-awareness and the capacity for basic emotions.  As a result of this horrific stereotype, many small children, some as young as 2 or 3 years old, have been placed in abusive institutions or abusive behavior modification programs.  Dangerous antipsychotic medications are often prescribed for autistic children, although autism is not a psychosis.  Many schools routinely label autistic children, even those of above-average intelligence, as mentally disabled and segregate them into special-needs classes.

            Strong stuff, much of which I have to agree with.  Autistic people do more often than not lose their civil rights, being placed in group homes or institutions by parents-become-guardians or social workers.              The legal concept of “civil death” would seem to apply to them more than any other group of Americans.  I know this from my experience with Sam.  My wife and I had to become legal guardians of Sam in order to prevent him from being probated to a state institution.  Even though we took away Sam’s rights for the best of reasons, we still feel conflicted about our decision and hope to restore his rights (by not renewing the limited guardianship) at some point in the future.  Not an easy choice, I’m afraid.

            But after reading these blogs, I understand Sam’s rage at all the people who have made decisions for him, without him.  His rage at me, at his mother, at his former school, at the job coach who told him he had “reduced potential,” at all the hectoring psychiatrists and social workers who interrogated him so many times that they all blurred into one big threatening face.  Sam understands that he has certain impairments, that he needs help doing certain things, but he’s also fiercely proud and wants to make his own decisions.

            Will the concept of neurodiversity lead to a new acceptance of difference?  Maybe, but acceptance by itself isn’t enough.  Most autistic people need accommodations and supports.  They need aides and note-takers at school, assistants and companions at home.  But let’s face it, everyone (autistic or not) needs help from countless others:  nurses, doctors, lawyers, personal trainers, therapists, housekeepers, gardeners, auto mechanics, electricians, plumbers, investment brokers, family members, and so on.  The autonomous individual is an American myth.  Needing help is not something to be ashamed of, no matter what anyone says.  For autistic people the question becomes how to pay for the accommodations they need. Where would the resources come from?  SSI and state Medicaid waivers (if you can find them) simply don’t provide enough funds to pay for the required services.  That’s the issue that will have to be resolved in order for this new “civil rights movement” to succeed.

            I certainly agree that autistic people have a different neurology, but I have mixed feelings about the argument that their neurology is no more or no less valid than that of neuro-typicals. I suppose, whatever valid means.  But not all autism is equal; some autistic people have more self-destructive, violent behaviors than others.  I don’t care how you rationalize, when your autistic child begins banging his head on the wall, neurodiversity theory doesn’t provide much comfort.  Some behaviors are dangerous and self-destructive.  Not only are these behaviors potentially fatal, they make it difficult if not impossible for autistic people to develop, learn, progress, and achieve, in the words of Michelle Dawson.  Sure, head-banging and self-injury are “different,” but they are in no way positive behaviors, for anyone.

On the other hand, people and organizations that perpetuate negative stereotypes do a grave disservice to autistic people and in fact reinforce the stigma attached to autism. What message does the Autism Speaks website send to its readers by including this pull quote on the “Founder’s Page”:  “The disease has taken our children away.”  Says who? Organizations like Autism Speaks would do well to actually listen to autistic people who are, after all, right there with the rest of us. Our autistic children haven’t been abducted by aliens.  Pretending otherwise is disingenuous and harmful to the entire autistic community.

            Let me end this chapter by deferring to Amanda Baggs and her Getting Out the Truth website.  Her website consists of a series of black and white photos of her doing typical (for her) things:  staring, lying curled up in a ball, flapping her hands.  The running text condemns organizations and institutions that appropriate the images and voices of autistic people for their own political and fund-raising purposes.  The purpose of Getting Out the Truth is to talk back, to correct the distortions of these organizations and institutions:

I’ve put up this site with trepidation because these words need to be paired to these images.  My life has a political context and I don’t want them to have the say in what words go next to pictures of people who look like me.

Here are the words that should go with any pictures of me.

I am not an empty shell.  Nobody is.

I am not a walking automaton devoid of anything inside me.  Nobody is.

Nobody kidnapped me.  I am right here. 

And:

If the Autism Society of America were making this website, they would not mention that in the entire way she lives her life she is trying to say

“NO!  This is not who or what I am!  I don’t want you using my image this way, I will not be portrayed as lesser, and I will not have my life medicalized this way so you can fund the elimination of autistic people from the planet.”

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