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

July 20, 2006 at 1:49 am (Autism activism)

[Originally published on September 14, 2005]

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!”

Metadenial:

“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):

Acceptance:

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.

Denial:

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

6 Comments:

At 4:50 PM, Anonymous said…
Hello,
As a Dutch reader of this weblog, I would like to thank you for your writing. It is very inspiring and I can think about it for weeks.
Thank you, a 20-y.o. diagnosed with classical autism.

 

At 6:43 PM, Lisa Jean Collins said…
Hi Dutch Reader!

Thank you for visiting my blog. I’m delighted that you found it to be inspiring. When it was finished, I realized it was long and pedantic, but…these were thoughts and feelings that I needed to express, regardless of length.

My sons are NT (oldest), Moderate PDD (middle), and Mild PDD (youngest, undiagnosed). I am an undiagnosed Aspie.

Welcome to my blog. I will try to write more soon.

 

At 1:13 AM, advocateforaspies said…
Lisa! excellent! You know, I LOVE being an Aspie. Makes us much more fun@@@@
You did a great job. I am going to have to try this some time:)
Lisa B
from your chat groups:)

 

At 2:19 PM, Anonymous said…
Dear Ms. Collins,

Thank you. I think this is a great piece. I’m the parent of an autistic child and it was difficult for me, at first, to accept the reality of this situation. But it’s been a blessing, especially for my family, to be made aware of the genetics of it. For instance, I can forgive my mother so much now that my eyes have been opened and I realize *she* is an undiagnosed Aspie. Her super-logical comments which always seemed so cruel before, I now see in a different light. I also see my child as such an incredible gift to me. She is not “toxic” and does not need a “cure.” I feel so sad for other children whose parents are trying to “cure” them of their essential selves.

Thank you again and keep writing!

 

At 2:19 PM, Lisa Jean Collins said…
Hello Lisa B!!

To anonymous, comment #4:

Thank you and welcome. I used to have a hard time accepting the reality of the situation, and when I discovered autism in my third child it did hit me hard. This was a year ago. I have changed and grown so much in only a year. The first step was stumbling upon Amanda Baggs’s writings and ultimately Frank’s AutAdvo site. The rest was introspection, trial and error, a lot of prayer and thinking, and finally action. I created my own Yahoo groups and then recently started writing about all the thoughts that have been piling up over the past year.

I will try to write more soon. In the meantime I’m trying to work on an illustrated book about a 12-year-old autistic girl. I wonder when I will finish this book!? It’s been hanging over my head, and I hate that. I just need to keep cranking away.

 

At 12:49 PM, lorguru said…
Wow, this is a great article. I did diagnos you with Asp as I was reading, and I mean that as a compliment.
You touched on a lot of issues that are important to me and that I am currently dealing with as the stepmother of a child with autistim/tourette’s syndrome.
His biological mother is not the custodial parent (we are) but she wants to tell us what to do in terms of “treatment”. She wants us to do IVIG, and we are not convinced. She, by the way, did not even show up in court the day we petitioned and won custody. Anyway, I did write about my son today in my blog if you care to check it out.
http://sardined.blogspot.com/

 

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