Wednesday, September 14, 2005

No is Not a Word: In the Search for a Cure, Some Parents Are Beyond Denial

When my first child was two years old and just beginning to talk, he said something that I thought was so cute and funny that I remember it to this day. He was very hooked on American cheese at the time, and he used to go into the refrigerator over and over again to look for those shiny squares of individually wrapped processed cheese food. Every few months during his cheese phase, whenever I would get the idea to look behind the couch for some reason, I would find billowy piles of cheese wrappers back there. Apparently he was getting up really early, eating stacks of cheese, and hiding the evidence. One day, while I was standing right there in the kitchen, he attempted to dig into the cheese drawer one too many times. “You may not have any more cheese,” I said, and that was the beginning of probably our first of many arguments. He started protesting, either by word or by gesture (I can’t remember, since it was almost 12 years ago) when finally I just said, “No!” loudly and firmly. At this point he was really mad at me. He pouted and said to me, as loudly and defiantly as he could without getting himself into trouble, “No is not a word!” and stomped out of the kitchen. My grandmother witnessed this, and when he left we just looked at each other and cracked up. Every so often that phrase will creep into our conversations, and we will laugh and remember how cute he was as a toddler, just learning how to navigate in this unfair world of grown-ups and forbidden cheese.

Anyone who knows anything about psychology knows that denial is the most immature of the defense mechanisms. Wikipedia defines it as follows:

Denial is a psychological defense mechanism in which a person faced with a fact that is uncomfortable or painful to accept rejects it instead, insisting that it is not true despite what may be overwhelming evidence. The subject may deny the
reality of the unpleasant fact altogether (simple denial), admit the fact but deny its seriousness (minimization) or admit both the fact and seriousness but deny responsibility (transference). The concept of denial is particularly important to the study of addiction. The theory of denial was first researched seriously by Anna Freud. She classified denial as a mechanism of the immature mind, because it conflicts with the ability to learn from and cope with reality.

Among the toddler set, simple denial is probably the most common type. It usually goes something like this:

“It’s bedtime.”
“No it isn’t!”
“Yes, it is. You look tired.”
“I’m not tired!”

If when I said, “No!,” my son had stomped his foot and said, “Yes!” I probably would have thought it was a little cute that he was learning how to argue with me, but I wouldn’t have thought it was hilarious, and I certainly don’t think I would have remembered this conversation all these years later. So why do I still remember what he said, and why did it strike me as so funny? People often laugh at the unexpected, and I think I was really surprised by his precocious use of what I’d like to call metadenial:

Simple denial:

“Your mother is dead.”
“No! She is not dead!”


“Your mother is dead.”
“There is no such thing as death.”

When my son said, “No is not a word!” he accomplished a power shift, at least in his own mind: (1) he took the power of “no” away from me; and (2) he was empowered to walk away from the argument rather than engaging in a battle that he could possibly lose. I should not be surprised at his level of sophistication at the age of two. After all, he is a genius.

While this way of thinking was rather funny and ingenious for a two year old trying to win an argument, it is quite the opposite when displayed by parents of autistic children. It is not just unfunny: It can be dangerous.

The National Institute of Neurological Disorders and Stroke (NINDS) states:

There is no cure for autism. Therapies and behavioral interventions are designed to remedy specific symptoms and can bring about substantial improvement. The ideal treatment plan coordinates therapies and interventions that target the core symptoms of autism: impaired social interaction, problems with verbal and nonverbal communication, and obsessive or repetitive routines and interests. Most professionals agree that the earlier the intervention, the better.

The Centers for Disease Control and Prevention (CDC) words it this way:

There is no known cure for [autistic spectrum disorders] ASDs. However, early and intensive education can help children grow and learn new skills. The goal of these efforts is to help with the difficult symptoms of an ASD in a child and to improve the child’s skills that help him or her talk, interact, play, learn, and care for his or her needs. Medicines can relieve symptoms and be helpful for some people, but structured teaching of skills (often called behavioral intervention) is currently the most effective treatment.

When you read descriptions of autism from any reputable medical source, you will notice that each one says there is no cure for autism, but that “treatment” refers to therapies targeting the symptoms of autism, not the autism itself, which cannot be eradicated in an individual. That is because autism is genetic, as stated unequivocally in this 2001 press release from the National Institutes of Health:

In collaboration with their European colleagues, scientists funded by the National Institutes of Health (NIH) have come one step closer to determining the genetic basis for autism. The researchers have identified regions of four chromosomes that appear to be linked with the disorder.

"These findings confirm the role of genetics in autism and are a major step in narrowing the search for the specific genes involved," said Duane Alexander, M.D., Director of the National Institute of Child Health and Human Development (NICHD) and co-chair of NIH's Autism Coordinating Committee.

Interestingly, the same year that the role of genetics in autism was confirmed, the Food and Drug Administration (FDA) denied the link between thimerosal and autism:

In response to section 413 of the Food and Drug Administration Modernization Act (FDAMA) of 1997, FDA conducted a review of the use of thimerosal in childhood vaccines. Our review revealed no evidence of harm caused by thimerosal used as a preservative in vaccines, except for local hypersensitivity reactions. Under the U.S. recommended childhood immunization schedule, the maximum cumulative exposure to mercury from thimerosal, at the time of this review in 1999, was within acceptable limits for the methyl mercury exposure set by FDA, the Agency for Toxic Substances and Disease Registry, and the World Health Organization.

When parents hear that there is no cure for autism, they can cope in one of two ways (referring back to the definition of denial):


Admit the fact and do not deny its seriousness (i.e., do not minimize the scope of the problem, do not just sit back and take a “do nothing” approach).

Admit both the fact and seriousness, and also take responsibility to love and support the autistic child in every way, as autistic children and eventually autistic adults.


Simple denial: “Yes, there is a cure for autism.”

Metadenial: “No is not a word.”

Metadenial manifests itself in two ways among parents desperate for a cure for autism:

I can’t hear you: I refuse to acknowledge or accept the fact that there is no cure for autism. Therefore, I will gather groups of professionals around me to search for a cure that does not exist. I will medicalize autism by putting it in the same sentence with diseases such as AIDS and Alzheimer’s. I will try to show that “cure” means curing individuals, and I will deny that the end result of autism cure could be a genetic screen to ensure that future autistics will never be born.

There is no such thing as autism: I believe that “autism” is not real, but actually a symptom of acute toxicity. I believe that if you remove the toxin, you can remove the autism. I believe that there is a vast conspiracy by “Big Pharma” and “The Government” to cover up the fact that children are being poisoned by vaccines and the environment. I will subject my children to any treatment that promises to extract their toxins and make them normal. In addition, I will subject my autistic children to unproven dietary interventions in a further attempt to reverse the effects of autism.

Cure Autism Now Foundation most resembles the first of these two responses. In its Mission and Goals statement, CAN transparently shows that its mission is to transfer power back to parents from the powers that have said “no”:

The message parents often receive is that science cannot be hurried. Cure Autism Now believes that, with enough determination, money and manpower, science can in fact be hurried so that answers are found sooner rather than later. Progress in the fights against AIDS and Alzheimer's have already demonstrated the power an organized effort among families can have. To do any less for people with autism is unacceptable.

The best example of the second response is Generation Rescue, whose goal is to empower parents with the truth about autism:

Generation Rescue believes that childhood neurological disorders such as autism, Asperger's, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning. When you know the cause, you can focus on cure. Thousands of parents are curing their children by removing the mercury from their children's bodies. We want you, the parent, to know the truth.

While slightly less brazen than Generation Rescue, The Autism Research Institute (ARI) all but states outright that autism is the result of a toxic assault on the body. According to the Autism Society of Canada, ARI not only promotes the Defeat Autism Now! (DAN!) protocol but also endorses heavy-metal detoxification (chelation) for the treatment of autism:

The DAN! Protocol

· A project of the Autism Research Institute, the DAN Protocol was developed as an alternative medical approach to the diagnosis and treatment of autism to be used by physicians as a guide for the clinical assessment of autistic patients, leading to appropriate treatment. DAN parents and physicians do not see psychotropic drugs as the best or only means of treating autistic patients.

· The DAN Protocol involves a medically supervised combination of changes to the diet and implementation of vitamin and supplement therapy as a means of producing changes in autistic behaviors. These changes include a gluten and casein free diet, elimination of junk foods and other food products that contain refined sugars, and the addition to the diet of a number of dietary supplements such as Calcium, Magnesium, Vitamin C, Vitamin B5: (Pantothenic Acid) Vitamin B6: DMG: Pycnogenol and Gaba.

· Treatments to detoxify the body are also a part of the Dan Protocol including Heavy Metal Chelation Therapy (used to remove toxins such as mercury).

· Methyl-B12 shots are also used to improve symptoms of autism.

This quotation is a slight misrepresentation of ARI’s actual position, however. ARI does not claim merely to have found the keys to improving the “symptoms of autism.” Bernard Rimland, the director of ARI, stated in his 2003 congressional testimony that autism is treatable, and what he means by that is that autistic children can fully recover from autism. What I find interesting about his testimony is his statement that “recovery” is defined as “no longer diagnosed as autistic” and “mainstreamed.” Neither of these criteria are proof positive of recovery. The diagnosis of autism is based purely on observation of behavior; many autistics have learned how to suppress their natural autistic tendencies in public places, including school. Who knows how many recovered autistic children are rocking in their rooms when nobody is looking? We can’t know on the basis of a few case studies. If autism is indeed primarily or solely genetic, no amount of behavior modification is going to change an autistic into a nonautistic at his core. Then there is the glaring conflict of interest revealed in Rimland’s own testimony: Many of these recovered autistic children, we learn, are the “sons and daughters of DAN! physicians.”

As a Christian, I have been increasingly interested in the phenomenon of Christian metadenial in the face of autism. The “world” says there is no cure for autism, but because devout Christians do not consider themselves “of this world,” the natural response for some is to ignore what the world says and look to the Bible for clues and answers. Christians—myself included—have pored over the texts trying to find anything that could shed some light on autism, only to come up empty handed. Jesus healed those who were blind, lame, deaf, possessed, leprous . . . but not a single autistic. Is autism a modern day plague? It is a curse on parents for disobedience? Is it a generational curse? “What is it?” many Christians wonder. I think Christians approach autism based on different sets of doctrines that are all relatively new in Christian thinking. The more traditional way of Christian thinking was that hardship and suffering were natural states of existence in this fallen world, that our tears would not be wiped away until we were in heaven or in our glorified bodies after the resurrection, and that we were to take up our cross (whatever that represented) and follow Christ. The new way of Christian thinking among some groups is that no amount of suffering or hardship is acceptable and must be eliminated---by being obedient to a set of principles, by naming and claiming some untapped blessing, by casting out evil spirits, or by going back to pre-Fall times and changing one’s diet:

  1. Adherence to the Law: Some Christians believe that blessings (including health) are doled out to Christians who on some level follow the Mosaic law: “If thou wilt diligently hearken to the voice of the LORD thy God, and wilt do that which is right in his sight, and wilt give ear to his commandments, and keep all his statutes, I will put none of these diseases upon thee, which I have brought upon the Egyptians: for I [am] the LORD that healeth thee." (Exodus 15:26) Therefore, autism is seen as an unhealthy state of being, and autistic children are viewed as a personal curse for disobedience or a generation curse for the sins of one’s relatives.
  2. Healed by Christ’s stripes: “But he [was] wounded for our transgressions, [he was] bruised for our iniquities: the chastisement of our peace [was] upon him; and with his stripes we are healed.” (Isaiah 53:5). This doctrine teaches that because the verb tense is present (“are healed”) this means all healing of illness already occurred on the cross, but Christians don’t know this, don’t name it, and don’t claim it, thereby leaving them without the blessing they are supposed to be entitled to. Another aspect of this doctrine is that healing always accompanies salvation, because Jesus always healed everywhere he went preaching the gospel, and the apostles were given the gift of healing. We are supposed to have the power to heal and be healed if we are truly Christians. This is supposed to be the sign of a true believer.
  3. Power over unclean spirits: Sickness and lameness is associated with demonic possession in the Bible: “For unclean spirits, crying with loud voice, came out of many that were possessed [with them]: and many taken with palsies, and that were lame, were healed.” (Acts 8:7). This doctrine teaches that all diseases and disabilities of mind and body are from the devil, and that every Christian has the power to cast them out. Jesus said to the twelve, “Heal the sick, cleanse the lepers, raise the dead, cast out devils: freely ye have received, freely give.” (Matthew 10:8)
  4. Back to the Garden: Christian parents who most closely align themselves with the creators of the DAN! protocol are those who believe we must get back to the Garden of Eden if we ever want to see our kids healed of autism. The rationale is that once sin came into the world, mankind began to eat meat. Before the Fall, this was “God’s diet”:

And God said, Behold, I have given you every herb bearing seed, which [is] upon the face of all the earth, and every tree, in the which [is] the fruit of a tree yielding seed; to you it shall be for meat. (Genesis 1:29)

For example, the makers of the Hallelujah Diet, modeled after the foods listed in the first book of Genesis, claim that the diet cures autism:

Further along in this Health Tip, I conclude the series on the CAUSE OF AUTISM! This information is absolutely MUST READ material! In this concluding article, I also share a letter from Pamala, who gives testimony of how her child was able to overcome AUTISM on The Hallelujah Diet.

On one Christian site, the author states that only Jesus can cure autism, but chelation is listed under the heading “dietary and medical intervention,” which is then followed by a list of DAN! physicians. DAN! claims to be able to achieve recovery from autism. The author does put out a disclaimer about “harmful pitfalls” but then leaves it to the reader to give prayerful consideration as to what to do.

As far as a cure, only Jesus Christ can cure any disease or disorder. All methods and means employed successfully are a gift from Him. There are a lot of things that may help improve the functionality of the victim but only God can cure the person. With God’s help, there are a number of things that are imperative if one is to help an autistic person.

First, know and believe that there is hope! For those of you who have tried many things and are frustrated, please do not give up. It is not merely a pep talk that we are giving here but a practical truth and reality: With God all things are possible.

The links give below contain some very useful information but we do not follow all that is stated on the web but prayerfully do what God tells us to. Thus many harmful pitfalls can be avoided in this still, experimental stage of treating the autism spectrum disorder. There is a tiny percentage of the medical community called DAN doctors (Defeat Autism Now) who are treating these children.

The usual tribalism between church and science, medicine and holistic medicine, established practice and quackery break down—somehow—when it comes to autism. Parents desperate for a cure often do not see the contradictions in the evidence put before them and will take risks with their children that they would not normally do in other circumstances. In a state of complete metadenial, parents have caused the deaths of their own autistic children. On the “science side” there’s this:

A 5-year-old autistic boy died Tuesday in a Butler County doctor's office while undergoing an increasingly popular though controversial medical treatment touted by some as a cure for the lifelong neurological and developmental disorder.

Abubakar Tariq Nadama died while receiving chelation therapy, an intravenous injection of a synthetic amino acid that latches onto heavy metals and is then passed in the urine.

This incident happened on August 25, 2005. On the “church side,” there’s this:

An 8-year-old autistic boy died during a prayer service at a Milwaukee church that the pastor said was meant to heal him of "spirits," and the pastor's brother is facing child abuse charges, police said Sunday.

The incident happened late Friday at Faith Temple, a six-family church in a strip mall in north Milwaukee, Pastor David Hemphill said.

Eerily, this "exorcism” occurred on August 25, 2003, exactly two years before Nadama was killed by chelation.

In the book of Job, thirty-seven chapters are devoted to the search for an answer to Job’s suffering. Job insists he has not done anything to warrant his suffering, declares God’s sovereignty, and refuses to reject God for either causing or allowing his suffering. Interspersed with Job’s words are the words of his “friends.” They sit around Job, ostensibly to comfort him, but they never have a proper understanding of the situation, never say the right thing, and never cease to cause him additional pain by their words. Their behavior stirred up God’s wrath:

And it was [so], that after the LORD had spoken these words unto Job, the LORD said to Eliphaz the Temanite, My wrath is kindled against thee, and against thy two friends: for ye have not spoken of me [the thing that is] right, as my servant Job [hath]. (Job 42:7)

When God spoke out of the whirlwind beginning in Job 38, He revealed the secrets of His creation and challenged any man to know how His universe really ticks.

Who [is] this that darkeneth counsel by words without knowledge?
Gird up now thy loins like a man; for I will demand of thee, and answer thou me.
Where wast thou when I laid the foundations of the earth? declare, if thou hast understanding.
Who hath laid the measures thereof, if thou knowest? or who hath stretched the line upon it?
Whereupon are the foundations thereof fastened? or who laid the corner stone thereof;
When the morning stars sang together, and all the sons of God shouted for joy? (Job 38:2-7)

Even Moses didn’t understand the depth and complexity of God’s creation, and he misspoke:

And Moses said unto the LORD, O my Lord, I [am] not eloquent, neither heretofore, nor since thou hast spoken unto thy servant: but I [am] slow of speech, and of a slow tongue.
And the LORD said unto him, Who hath made man's mouth? or who maketh the dumb, or deaf, or the seeing, or the blind? have not I the LORD?
Now therefore go, and I will be with thy mouth, and teach thee what thou shalt say.
And he said, O my Lord, send, I pray thee, by the hand [of him whom] thou wilt send.
And the anger of the LORD was kindled against Moses, and he said, [Is] not Aaron the Levite thy brother? I know that he can speak well. And also, behold, he cometh forth to meet thee: and when he seeth thee, he will be glad in his heart. (Exodus 4:11-14)

Denial is a two-edged sword. It can help a person to cope with uncomfortable thoughts and feelings, and to some degree we all use denial even as adults. The flip side of denial, however, is that it can be used to cope with uncomfortable realities, and that is why addicts make the most use of it:

Denial blinds addicts to the cause of their problem -- their dependence on drugs or alcohol. It allows them to pretend that their using is not destructive. Denial is so powerful that addicts are often the last to recognize their disease. Some pursue their addiction as their life and health deteriorate, continuing their denial until they die.

Autism is a genetic variation of humanity, which is God’s creation. True, there are aspects of autism that are unpleasant and difficult. However, there are aspects of the entire human condition that can be just as unpleasant and difficult, maybe even more so. Parents have had to endure the realities of deadly diseases, prostitution, molestation, drug addiction, incarceration, suicide, and murder of their children. Autism pales in comparison to these realities, at least for me.

Nobody is meant to go through this life unscathed, free of anything that is unpleasant. Parents, if you are addicted to the quest for a cure for autism, I ask you this: What reality are you running away from? Is it the reality that there is no perfect child and no perfect family? Is it the possibility that your child’s autism was inherited from you? Are either of these realities really so bad after all?

Lisa Jean Collins c 2005

Thursday, September 08, 2005

Form and Functioning: For Autistics, There’s No Truth in Advertising

In the world of advertising, marketing, and sales, the success of most products depends on a two key elements: form and function. When design elements such as beauty, fashion, and ergonomics are blended seamlessly with functional elements such as speed and durability, the expectation is that the product will be highly marketable and profitable, especially if the price is competitive. In TV commercials, other advertising campaigns, and articles on the art and science of advertising, the blending of form and function has been likened to a marriage. In an old article from Creative Computing Owen W. Linzmayer explained why one particular printer was better than all its predecessors:

In the world of printers, the marriage of form and function is not always a happy one. Often one trait is compromised for another; leaving you with either a beautifully inoperative machine or an unsightly beast of burden. Such is not the case with the 7500EP dot matrix printer from C. Itoh. Recently reduced in price to a competitive $289, the 7500EP is one dot matrix printer that combines sleek good looks with uncompromised features.

This kind of binary thinking works very well when it comes to selling products. The 1980s printer probably was something brand new, replacing some pretty primitive equipment. The iPod stands out as a recent example of form and function being taken into consideration in the formation of a truly innovative piece of technology. Innovation becomes excess, however, when manufacturers seek to achieve perfection—or public perception of perfection—in products that need no real improvement. In a speech from the Toyota press room on the Lexus LF-A, Dennis E. Clements stated: “The key to our success for the past 15 years will remain the key to our success in the future: Strive to build a perfect car and deliver the perfect customer experience.” His colleague Wahei Hirai later remarked, “Simplicity. In form and function it is styling that is uncluttered and void of extraneous elements, revealing beauty with extreme depth and purity.”

Marketing hype is designed to create a false dichotomy in the minds of most consumers: Other products are either attractive or operative, but our product is both. It creates discontentment with the products the consumer already possesses. Television ads seem especially designed to feed the consumer with a constant diet of “bigger, better, newer, faster, cheaper,” causing the consumer to cast a jaundiced eye upon a house full of a wide array of items that actually work perfectly well and look perfectly nice. Greed sets in, and everything each season becomes a “must have.” Finally, it draws the consumer in, keeps him there long enough to buy the product, and hopefully creates blind loyalty to the manufacturer, so that when its product breaks or becomes out of fashion—and it will—the consumer will come back and buy another one, only this time even better, more “perfect” than the last one.

In another article on this subject, Karen Booy interviews designer David T. Hawko, who lays out some tips for booth exhibitors to maximize their “punch” on the trade show floor. Why is punch so important? Because “the advertiser only has a few seconds to get your attention and draw you in.” When asked, “What are the most important elements of good booth design?” Hawko replied, “Simply form and function (form rings the bell, function makes it sell).”

Normal and Abnormal

At this juncture, you might be wondering what any of this has to do with autism. My answer is this: binary thinking, perhaps even from a marketing model, is widespread when it comes to interpreting, packaging, and sorting autistics into groups. If you are autistic, you are not normal; if you are normal, you are not autistic. Normal is good; abnormal is bad. Normal is complete; autistic is deficient. Parents with children newly diagnosed with autism are usually sucked into the hype that surrounds autism. Again, the benchmarks of such hype are (1) false dichotomy, (2) discontentment, and (3) loyalty to the author of the hype. Very few parents—probably none, unless they themselves are autistic or they have raised one or more autistics already—are nonchalant, let alone happy, when they receive the news that their son or daughter is autistic. Rather, they are “devastated,” and I use that word very purposefully; it is the word most often used to describe the feelings that come over newbie parents. That is because they perceive of autism only in a negative light. Autism is abnormal is bad. Second, they become discontent with their child and usually seek out a cure as soon as possible. When they look at other normal children, the natural reaction tends to be sadness springing from jealousy. I know because I have gone through the gamut of these emotions myself. This writing is not just a theoretical exercise. Finally, if completely drawn in by the “bell,” parents can become fiercely loyal to whatever organization is promising to cure their children. The Recovered Autistic Children video put out by Defeat Autism Now! comes to mind. Its shameless use of cameras panning the audience for a good shot of sobbing moms, and the bizarre display and interviewing of “cured” autistic children on stage, belies a loyalty bordering on religious fervor.

Let’s go back to the first example of form and function, in which the writer was extolling the virtues of this new computer printer. He presented the case that—up until now—printers were either an “unsightly beast of burden” (worked well, but were woefully lacking in form) or “beautifully inoperative” (were pleasant to look at, but were lacking in function). This was intended to “ring the bell” of the reader, making him believe that there was now a perfect product where none existed before. When it comes to printers from the 1980s, this was probably quite true. But when this kind of thinking colors the interpretation and classification of human beings, it becomes problematic and even dangerous.

In human terms, the “perfect product” can be seen as the normal, or neurotypical, individual. Normal people are presumed to have a perfect marriage of form and function-ing, and this makes them desirable to each other and profitable for society as a whole. For normals, form consists of external features such as appropriate outward appearance, behavior acceptable to other normals, independent life skills, and ability to produce intelligible language. Functioning consists of the internals, which are presumed to be measurable with a high degree of accuracy: intelligence, as measured by IQ tests; and thought processes and comprehension, as measured by writing skills and verbal responses to questions.

Perceived deficiencies in form are generally overlooked when a person has a function that society values, usually monetarily. For example, a blind and not conventionally attractive person with an incredible singing voice (e.g., Stevie Wonder, Diane Schuur) can have a vibrant musical career despite not being totally normal (the fact of their blindness seems to be inserted into every article about them). A wide swath of social forgiveness is usually allotted to socially, neurologically, or physically abnormal geniuses who are able to make significant contributions to society through science and technology (e.g., Albert Einstein, Bill Gates, Steven Hawking). This would be akin to the “function over form” rule in certain products, but not others.

A handful of autistics have been catapulted into the spotlight because of some kind of marketable talent or because they represent some kind of an interest group (e.g., Temple Grandin, Tito Mukhopadhyay, Sue Rubin). Unlike the other examples, however, it seems to be the autistic stars who end up being described as “inspirational,” because they are doing, saying, and producing things that are thought to defy their diagnosis. For most autistics, however, form doesn’t “ring the bell” and draw others in to get a closer and deeper look at the whole individual. The outward signs of their autism can be so annoying, stigmatizing, even sometimes scary to neurotypicals that function never gets addressed at all, and if it does, it is wildly misinterpreted and downgraded on the basis of form alone. This leads me to the second example of binary thinking about autism.

High-Functioning and Low-Functioning

If you are autistic, you are usually given the additional label of either high-functioning or low-functioning, defined as follows:

Children with low-functioning autism are more likely to display mental retardation, epilepsy, and extremely limited receptive/expressive language skills. They are extremely weak on "theory of mind," and overload on too much sensory stimulation quite easily. As a rule of thumb, testing will show IQ ratings of 70 or below... Children with high-functioning autism are much more efficient with expressive and receptive speech, less likely to suffer from epilepsy, and have IQ scores of 71 or above. Although too much sensory input can overload them, they have a higher tolerance and learn to desensitize themselves. These children have a stronger grasp on the theory of mind and can empathize with the feelings and reactions of others.

Enter Amanda Baggs. Amanda is an autistic self-advocate and writer who defies any autistic label. As the terms are used by most, is she high-functioning? Yes. Is she low-functioning? Yes. Is she functioning? That depends on the day and whether she has adequate support staff. I have known her through her writings for nearly a year, and I have gradually come not only to understand but to accept her views on the trouble with labeling in autism. She has written extensively on the subject, both on self-advocacy groups and on her non-site. The following excerpts are from her blog, titled Ballastexistenz. The first problem with these labels is that they come with a set of assumptions:

Are some of the assumptions about how people work ingrained so deeply that when people come across an example of a person who does not work like that, they literally are incapable of perceiving or understanding it? At least for some people?

For instance, when I say that one ability does not mean another ability is necessarily there. I mean that one ability really doesn't mean that another ability is necessarily there, no matter how related they may seem to someone.

That means, for instance, "Just because I can type, doesn't mean I can tell you that I am in pain or where that pain is located."

But other people seem to think they're dropping all their assumptions, and then they will say something like "Well it's good you can type, because you can tell people you're in pain." No, actually, I can't, and I've almost died thanks to that one not being noticed, so it's a bit of a sore spot, thanks.

When people do things like that, it makes me wonder what on earth they think the assumptions they're dropping are. I can say, "Drop your assumptions, the fact that I can't cook has nothing to do with whether I know what toast is." And be back on that damn toast-making program by the next day — "Obviously you haven't learned what toast is if you still can't make it after all this time" and so on. What assumption is being dropped here? I can't tell. Is there one? (Amanda Baggs, Assumptions, 09/04/05)

The second problem is that this kind of thinking can actually kill, in that if you demonstrate that you are “high-functioning” on any level, you can be cut off from access to desperately needed services when you are also “low-functioning.” In writing about Joel Smith and his article You Have it So Good, Amanda states:

Joel Smith doesn't often pass for NT, but he can drive, work, and sometimes speak. And he's a self-advocate, no-cure, disability rights sort of person when he writes, not a woe-is-me my-life-is-hell-I'm-the-lowest-functioning-person-on-the-planet we-need-a-cure-for-autism type. All of that works against him in the stereotypes of many. This kind of stereotyping has got to stop. It may not sound like sophisticated disability theory, but these are people's lives we're talking about. He's not the only one. The prevailing view of how abilities fit together, as well as of how abilities are connected to political views, has to change. Or people will die, and in fact I am certain that many people are already dead over exactly this kind of thing.

People need to stop spreading these stereotypes. That includes autistic people who think that by questioning our diagnostic credibility because of our political views, they will come out ahead services-wise. We're all in this survival thing together and it's not okay to sacrifice others that way. (Amanda Baggs, You Have It So Good, 09/02/05)

Let’s get back to the marketing model of autism. Read the following and forget for a moment that the writer is talking about cars. Change “product” to “autistic” and “consumer” to “society” and you will get a sense of what could be going on here:

One thing is clear, although functional performance may ultimately be a necessity and justify ownership, the aesthetics inevitably contribute to our initial perception of a product and create desire. In a commercially competitive world the ‘style’ is often the only way to differentiate two similar products and as with a piece of sculpture it has to promote a set of emotional responses from the consumer that ultimately lead to purchase. (Russell Carr, Head of Lotus Design)

If an autistic person is both low- and high-functioning, but the initial perception is that of a low-functioning individual, there will be no social desire generated within the first few seconds of meeting that person, the observer will not be drawn in, and the element that is considered high-functioning will be dismissed outright as incompatible with the externals.

People who had no knowledge of me in person were calling me a liar. They said I wasn't really autistic. They said that if I really were autistic, I did not really live the kind of life I led. They said that I did not look like I did. They even told me that I could speak, that I had a job, that I had never lived in an institution, that I did not bang my head, that I had never had any of the "therapies" I was criticizing, that I could "take care of myself." (Amanda Baggs, You Have It So Good, 09/02/05)

Conversely, an autistic person who appears to be high-functioning may be quite impaired in other ways, in silent ways, and that person’s lower functioning may be dismissed and badly needed services denied, as described in Joel Smith’s article.

I have used the terms high-functioning and low-functioning autism many times, but I should know better. My own son, who is 11 years old and autistic, has never fit neatly into any category. He has been given many diagnoses: PDD, macrocephaly, ADHD, ODD, autistic spectrum disorder, autistic disorder, and (most recently) a note that read: “rule out mental retardation.” My son reads, writes, speaks, and reads music. He plays video and computer games. He knows how to program a VCR. He also bites me and kicks me, tries to touch my breasts all the time, and has just started spitting again—on the floor, into his cups, on my car seat. He ranges from talking nonstop to not being able or willing to talk at all, or hardly at all. He loves his kid brother and tries to take care of him as much as possible, but he squeezes him and knocks him down, not being able to control his impulses and extreme sensory defensiveness. He got A’s on all his spelling tests last year in fourth grade, but he still struggles with second-grade-level math and reading.

Despite all of these contradictions, up until I started reading—and really getting—Amanda’s recent writings, I have not hesitated to describe my son as a “high-functioning autistic,” even in the course of casual conversations when using a label wasn’t even necessary. I’m thinking back now to the car quotation above: “In a commercially competitive world the ‘style’ is often the only way to differentiate two similar products.” I’m wondering how functioning labels came about in the first place, and I wonder why people continue to use labels long after they lose meaning. The fact that someone can be truly low- and high-functioning simultaneously or each at different ages, places, and situations means that both labels are true and yet neither is true either. If neither is true, then why not throw both labels away and stick with just one word: autistic? It goes back to competition. Once the “goods” are labeled, it’s time to compete for services.

In order for this to change and for autism labels to be abandoned, there needs to be a realization that labeling is a form of ownership, kind of like slaves being branded by their slave masters with the words “slave for life.” Labels are purely a reflection of how well normals (educators, employers, society) will tolerate autistics. Thus, the label owns the autistic, not the other way around. The way to end this is for autistics to take ownership of themselves by not buying into the labeling scheme. Labels do not reflect, on any level, an autistic person’s level of happiness, either. Who is to say that the highest functioning person—autistic or otherwise—is not also the happiest person? How one interprets the meaning of functioning all depends on whether one believes there is truth or hype in advertising.

Lisa Jean Collins c 2005

Saturday, September 03, 2005

A Journey Marked By Milestones

Last summer I received a postcard in the mail from a neighborhood church nursery school I never knew existed. The card said there were only a few openings left and that I should call soon to reserve a spot for September. I showed the card to my husband and asked him if I should enroll our youngest son. He said something like, “Sure, why not? Give them a call.” I was pleasantly surprised, because he had previously referred to church schools as “rinky dinky day schools,” without elaboration. I can venture a guess as to why he would call them that. He went to one as a young boy, and he told me once that he remembered marching around singing “Onward Christian Soldiers” and hating every minute of it. His parents were not particularly religious, and they still aren’t. His mom is Jewish. I think there were just too many contradictions for him, and it didn’t take him long to reject religion, church, God, and rinky dinky day schools. Perhaps he was beginning to soften. There was a time when he ruled out parochial school for our kids.

I, however, never ruled them out. By the time my first son was born, I had already come back to the church after many years of having fallen away from it and believing I was an atheist. The idea of sending my youngest son to a parochial school definitely appealed to me last summer. We had no church to call home anymore. It had been far too difficult to find the right place. The only church I could find that had a “special needs church” during the regular service was rather far from home and somewhat inappropriate for my middle son, who is eleven years old and autistic. He liked it and all, especially the guy who played guitar for the kids and who was probably also autistic (we talked one day), but I thought it looked more like a “multi-handicapped room” and I wasn’t sure if this was the right setting for him. Most or all of the other children were nonverbal. Some were in wheel chairs, and one child had a helmet. Had I pushed for him to be in regular “junior church,” I would have needed to provide my own aide. I had no access to wrap-around services because I let our account with the county expire. When my youngest son started showing signs of autism, the thought of dragging the kids to church with no real supports in place became more than I could take, so we all stopped going.

I wonder if I have just been making excuses for not going to church, or if the issues I have with church and autism are legitimate. I was roundly chastised recently by a church-going friend who basically accused me and others in my situation of being “self-deluded.” She said it was my responsibility to keep looking until I found the right church, and that I shouldn’t imply that all churches are hostile towards autistics just because I have had a few bad experiences. I had had some pretty awful experiences in the past with my middle son and the way he was treated at the church that baptised him. The thing that bothers me is the nagging feeling that she could be right. I have gotten tired of searching, tired of trying to explain my situation, tired of going to church with just my two kids and not the entire family. My oldest son doesn’t want to go anymore for a whole host of reasons. Perhaps church fatigue has made me lazy and fatalistic. I don’t know. But I still play out this fantasy in my mind from time to time:

I’m driving around the neighborhood. I turn a corner, and right in front of me lies a church with a gigantic white banner draped across the front of it. In huge red letters, the banner reads:

Feeling guilty about not going to church while still trying to raise up my sons in the “nurture and admonition of the Lord,” I jumped at the opportunity to get my son into this nursery school. I did not do my homework; maybe I saw the postcard as a “sign” that this was the right place. I have gone on impulse and instinct throughout my life, and this time was no different. It could have been utter burnout that caused me to jump into this school with both feet, or it could have been that I was pinning my hopes on this church—finally—being the one church that would overlook one of my children’s developmental delays and treat my son as a person, not a walking diagnosis.

I knew that my son was probably autistic when I first made the decision to call up the school, but I was halfway between being in denial about his autism and trying to cover it up. I called up the director and made an appointment to see the school. She seemed nice enough, and the classrooms were big and clean with plenty of toys.

What could be bad?

Things began to unravel before school even began. The director called me up shortly before the first day of school and said she needed to shift some things around based on birthdays and class numbers.

“Would it be alright to put him in the 3’s class?”

“Sure,” I said, as I was completely distracted and overloaded, trying to stir something in a pot, talk on the phone, and handle being literally pulled in different directions by my kids. I did not comprehend at the time that he was going to be the youngest child in his new class. Needless to say, this made his delays that much more painfully obvious. When I came up for an orientation meeting with the teachers one night before the first day of school, I really started to squirm. I had this sick feeling that this was all going to blow up in my face. The new teacher had a heavy Scottish accent, so heavy that I could barely understand a word she was saying. If I couldn’t understand her, how was my son going to be able to? Her assistant didn’t smile; she made me nervous. Then at the meeting, the head teacher dropped the A-bomb. She had worked with autistic children before taking this new position.

Okay, where was I going to hide? How would I slink out of there? She would have him pegged within 30 seconds of meeting him.

My heart started racing, but I kept my cool outwardly. My face is usually flat most of the time anyway, unless I am extremely angry or extremely happy. So in my natural poker face, I raised my hand and asked whether I could communicate with her by email, and she said I could. I figured if he ended up staying in the school, we would be communicating quite a bit.

The first day was a disaster. I didn’t realize it at the time, but he had been suffering from seasonal allergies. He was cranky, his nose was itchy, and he had no way of telling me how he felt. There was a tag on the back of his brand new Blues Clues shirt, and it wasn’t until we got home that I realized the tag had actually been irritating his neck, because his neck was reddish in that area. He cried and fussed most of the time that first day. He tried to pick off and eat the staples on the puppet theater, and I was becoming frantic. If I were to leave him in that classroom, surely he would end up in the emergency room. Never again did I want to see my boy in the ER with a diagnosis of “ingestion of foreign body.” The last time was a piece of metallic confetti from a birthday party.

I cannot possibly let this happen to him again. I have to do something.

I was sitting there watching him all the while knowing that this class was wrong for him. The other kids were all talking, and most if not all were potty trained. There were kids in that class who were close to four years old. He wasn’t even three yet! He wanted to interact with a little girl, but he just knocked her down on her rear end because he couldn’t tell her his name or say, “Hey, do you want to play?” She didn’t even cry or seem to care, but her mom told him, "Don't do that," right in front of my face. I hate when parents scold my kids right in front of me.

That afternoon I called up the director and told her this was not the right class for him. I wanted him in the 2’s. She decided to observe him in the 3’s while I sat in the 2’s by myself, and then we would switch. He would go into the 2’s room with her, while I sat in the 3’s. This sounded like a good plan. I went into the 2’s room and sat watching the other kids. Each one came in and seemed to know just what to do. Some chose the Play-Doh station, and I marveled at how none of them wanted to taste it. Some of the girls went over to the pretend table and played tea party. Nobody cried, climbed, or screeched, and nobody went on a treasure hunt for staples. I started feeling rather crestfallen, but I continued to observe and chat a little bit with the teachers, trying to prepare them for my son and his “issues.” At one point, I looked up and noticed a small sign on the wall, well above eye level, practically touching the ceiling. It was as though the sign was never intended to be read. It said:

“Childhood is a journey, not a race.”

I agreed with that and felt encouraged by it. Maybe this was the school’s philosophy, too. Maybe the director would be progressive and figure out a way to make this work. As I sat there thinking about the words on the sign above me, I could hear my son making loud noises from the other room. The rooms for the 2’s and 3’s were separated by swinging doors. I had just noticed that.

Why hadn’t I noticed that before? Come to think of it, there are swinging doors on three sides of this room. Did that little girl just go into the 3’s room? Didn’t anyone just see that happen? Not a good sign.

From the other side of those swinging doors, my son was sounding very much like a pterodactyl: you couldn’t quite tell if he was happy, upset, or angry. It was a loud, squawking sound. It seemed louder and more unusual than anything I had heard at home. The director summoned me to switch rooms, and I walked into the 3’s, again sitting alone watching other people’s children, feeling emotionally naked and depressed. I sat there and watched all these 3’s in circle time and craft time.

Why am I sitting here observing a class my son will never be in?

I dutifully went through the charade of observing this class, because I was told I should do that. This is the story of my life: Be dutiful, think later, then rebel. I was only up to the dutiful part so far. Why didn’t I just tell her, “This is entirely unnecessary. I already observed him in this class, and I can tell you that it is not appropriate for him”? As I sat there feeling uncomfortable, hearing his squawking coming from the 2’s, dreading the director’s verdict, and watching all these other children doing the preschool thing, my eyes started filling up—but I did manage not to cry. That’s another thing I hate: crying in front of total strangers. I started to cry because I was not where I am today in my thoughts about autism. I was midway between seeing autism as a disease and autism as a difference. Autism was more like a family secret that I had hoped nobody would notice this time around.

The assistant teacher came over to me and asked me if everything was alright, and of course I lied and said I was fine and just observing the class. She was the one who asked me the day before if my son was able to respond to his own name. Not only did he not recognize his name on the name tag she held out for him, but he didn’t even turn his head when she called his name. He wouldn’t look at her. He wanted to get the Mega Blocks out so he could put them in rainbow order and then toss them behind his back, one by one, not even looking to see where they landed. Had I never complained about this class, it would have taken the teachers only a day to have him pegged as autistic. Maybe I was running from that, trying to buy him more time by putting him in the 2’s. It didn’t work.

The director had finished her observation, and she called me to come down to her office along with my son. I didn’t say anything as we walked down the stairs. I wasn’t positive what she was going to say, because the squawking had diminished considerably when he went into the 2’s class, but I couldn’t see what he was doing in there either. She sat down and told me she had some “concerns.” I pretended not to know what she was going to say. She then showed me the notes she had taken while observing him in both classes. I remember that there were six things she jotted down. I think they were:

Eye contact
Loud, calling-out sounds
Rocking on feet
Play skills

She noted that he was able to respond verbally to some questions, but that his overall development was very delayed, at least by a year in some areas. I wish she had stopped there, but then she started whipping out developmental charts for 2 year olds and 3 year olds. I thought that was kind of presumptuous. She seemed like an armchair diagnostician, and I didn’t like it. Her charts reminded me of the Denver Prescreening Developmental Questionnaire that I had to fill out at the pediatrician’s office at every well-baby visit. It is a scale to chart developmental milestones and screen for children who are falling behind. After she said she thought he should be formally evaluated by the county, I just said:

“Are you going to kick him out?”

I stared at her while she tried to gather her thoughts together. I wanted to catch her off-guard and see how she would respond. She quickly denied that she would ever do that, and she assured me that he would be fine in the 2’s. I became strangely defiant at this point in the conversation. For some reason, I didn’t want her to know that I already knew what she was going to say. I didn’t want to tell her that I was already aware of his delays, and that I had suspected he was on the autistic spectrum for quite some time. I wanted to see what she was going to say, how she was going to say it, and what she was actually going to do. I thanked her and took my son upstairs and out to the car. As far as I knew, he was going to stay in the 2’s, and I was going to go along—dutifully, and against every fiber in my being—with the plan to have him formally evaluated by the county, just so that they would not kick him out. Years ago, my middle son had been kicked out of so many classes and schools; I didn’t want this to happen to my little guy. But an evaluation never ended up happening anyway.

My son attended one half-day of school in the 2’s. I was late picking him up, and when I entered the room he was the only child there. He was sitting on a rocking horse, rocking and smiling. He greeted me with those gorgeous eyes, and I thought he seemed happy. I couldn’t figure out, though, why he was the only kid in the room. The two teachers mumbled something about early pick-up, which nobody had told me about. Something wasn’t right. They were just looking at me, strangely, as though I had food on my face or an unbuttoned shirt. It seemed like they were trying to be polite by not saying anything to me at all, not even anything to my son.

Not long after I got home, the director called me to say that my son could not attend the school without an aide. She said the teachers complained that he kept getting out of the room—the room with swinging doors on three sides. I would have to pay for the aide out of my own pocket until the county could set up an on-site evaluation and pay for someone to shadow him. I became angry while talking to her, but I stuffed it.

Who would put a group of two-year-olds in a classroom that did not have proper doors?

This was her first year as a director, but I considered this a major oversight. I said, “He was probably just looking for me,” but later I started doing a lot of thinking, and I was getting madder. I wondered why the rooms for the four- and five-year-olds had a single door with a door knob, but the classrooms that really needed doors didn’t have them. Two other kids walked out of the 2’s room in the short time I was there observing the classrooms.

Were they going to need a shadow, too? No, of course not. They were just “active,” not autistic.

That’s when I realized why the teachers were staring at me and not saying anything. They had been debriefed.

Toward the end of this phone conversation, I didn’t bother to ask the director for time to think about what I wanted to do. I just told her that getting an aide would not be necessary, because I was withdrawing my son from their school. She said she was sorry to hear that. I needed to go back to the school to pick up his things, and so I had the opportunity to talk to her again. We were walking down the hallway, and even though the word “autism” had never come up in any of our conversations, she casually mentioned that she had a friend who wrote a book about raising her autistic son.

Oh, I get it. She is an expert on autism because she knows a woman who wrote a book about it.

I quipped, “Sure, I’ll read it in my spare time,” and she braced at my bluntness. I knew I had probably offended her at that point, but it was too late and I couldn’t take it back. I decided that there was just no point faking it anymore with her, so I turned to her and said:

“Look. I know all about autism. My middle son is autistic. I am a veteran.”

It took her a moment to get her composure. She was probably trying to figure out why I hadn't just told her all this from the beginning. As I was leaving, she told me her friend’s name and the title of the book, but I could not retain the information because I was too busy thinking. I was trying to process this school, this director, and the sign upon the wall.

“Childhood is a journey, not a race.”

My oldest son’s principal was fond of slapping feel-good messages and other platitudes all over the walls of his old elementary school. By fifth grade, my son became embarrassed and irritated by these corny posters. He felt it was an insult to everyone’s intelligence—not just the kids—and he hated how this principle seemed to be trying too hard to turn his plain old school into a blue ribbon one. Thankfully, my youngest son was too young to read, understand, and ultimately see through the hypocrisy of this sign on the wall, but I was left asking myself this question:

What kind of journey is childhood according to most educators?

I think the journey they are talking about does not include children who take a circuitous route or walk too slow. It is a journey that follows a straight path marked by milestones—developmental milestones—carved in stone and embedded deeply in the ground. I don’t believe that most educators truly believe that childhood is “a” journey, because if it were any journey it could start anywhere, follow any path, go at any speed, stop at any rest stop, and end in places not necessarily intended or expected.

I found to my surprise, though, that not every church school is a rinky dinky day school. A few months ago, I visited one unlike any I had ever seen or heard about. I didn’t see any kids marching around like tin soldiers, and there were no platitudes posted on the walls. The director and I talked a great deal about the trouble with preschools these days. We discussed how kindergartens are becomingly increasingly academic and rigorous, and how this is having a trickle-down effect on preschools everywhere. Many children cannot keep up, simply because they aren’t ready for all of this structure. Her philosophy is to let kids be kids, let them get messy and explore, and let them work out things among themselves, with gentle guidance from the teachers. To my neighbor, this seemed like glorified babysitting; to me, it seemed like a safe haven for my son. The director knows all about my son and his so-called developmental delays, and she wants him anyway. I did not tell her that he is autistic, because his traits are rather mild and he is still very young, but if she were to ask me I would tell her the truth without shame. It could be that this image I keep having of a giant banner waving over a church no longer has to be some cherished fantasy. I believe there is a church out there that wants my autistic kid, and I just might have found it.

Lisa Jean Collins c 2005