Saturday, June 23, 2007

Dispelling Autism Myths: Why Curation Isn't The Answer

Every now and then, I run across someone that hasn't gotten the word that autism is a spectrum condition. Although science has pretty much shown conclusively that autism comes in varying flavors, from the most disconnected, nonverbal, helpless autistic all the way up to people that are socially inept, obsessive, but generally capable of living life normally, there are people that refuse to accept this.

These people refuse to accept that there is anything to autism other than disability, helpessness, dependence, and pain in those who care for them. This would be a contemporary view twenty years ago, but it isn't now. Unfortunately, there are well-known "experts" in the autism community that continue to promote and spread the myth that autism is nothing but people who don't communicate and who can never live without a full-time caretaker. Bernard Rimland is one of these dinosaurs. Despite the fact that he wrote the foreword for Temple Grandin's first book, acknowledging that she was autistic, he continues to insist that people that can talk, live independently, and get college degrees cannot be autistic. Temple Grandin, in case you do not know, travels around the world speaking at autism conferences, lives independently, and has a doctoral degree.

These people invariably find fault with what I have written here on a number of points. First, they almost always deny that I am autistic. It is standard procedure for a person arguing with an autistic person about matters of autism to question whether that person is really autistic (apparently as a means of reducing his credibility). I have gotten this so much that it is almost like waiting for "the other shoe to drop" once someone disagrees with me. If I finally convince them that I am what I claim to be, I usually hear that I am an exception. Temple Grandin's an exception. Donna Williams is an exception. All of the other people like me that have web pages are exceptions. So very many exceptions running around there are! I have made the acquaintance, online and offline, of hundreds of "exceptions."

The truth is that there are more "exceptions" than these people know. While they can handily deny our existence when it suits them, we're out here, and we're just as much a part of the autism equation as any low-functioning autistic. While they want to define autism only as a horrible, child-stealing enemy that must be eradicated (which leads them to ignore or marginalize autistics that can communicate), the fact is that people like me are no less a part of what autism is than the individual they are personally trying to cure. And invariably, there is always one person that defines what "autism" means for them.

The people that desperately need autism to be this horrible foe, rather than a condition that one can live and be happy with, even be proud of, are very resistant to the idea that there are a lot of "exceptions" like me around. If they took a unified view of autism, including ALL autistics, not just the ones that meet their outdated and self-serving definition, they would have to admit that people like me might have something valuable to offer them, in terms of our opinions and experiences. They don't want to do that, because people like me overwhelmingly do not support the "Cure Autism Now" type agenda. Given that just about every autistic adult is steadfastly opposed to Cure Autism Now and similar groups, the anti-autism people must keep us marginalized and irrelevant, or else they would have to admit that there is something wrong with their agenda when nearly all of the autistics that can communicate oppose the groups that are trying to eradicate us out of "compassion."

One person I argued with recently suggested that no one is out to cure people like me; the cure is needed, she said, for people like her son, who are nowhere near as high-functioning as am I. That would be a reasonable excuse if there were a cure that could be applied only to adult autistics, who could choose for themselves not to take the cure. However, there is no such cure, and given what neuroscience has revealed about the structural brain abnormalities that come with autism, it is abundantly clear that there is not going to be a cure that will help someone who is already autistic (which is NOT to say that any autistic person, low functioning or otherwise, is hopeless, or that they should be left in a state of neglect. Please be perfectly clear that when I say there is no cure, I mean that there is nothing that will make an autistic person into a normal one. In no way am I suggesting that there should be no attempts to improve the lives and the functioning level of any autistic child. I'll get more specific about that later in this article).

There are over a billion neurons in a human brain, and they are connected to each other with an intricacy that boggles, no pun intended, the mind. Curing an autistic person would mean making the brain structures that have developed differently become more normal. It would mean thickening the cerebral cortex in the posterior portion of the brain. It would mean trimming millions of "extra" neurons in the gray matter of the cerebrum-- and this would have to happen without disturbing the intricate balance of neurons that results in human consciousness. The corpus callosum, the amygdala, the cerebellum, and several other brain structures that are typically underformed compared to an NT (neurologically typical; in other words, normal) brain of the same age would have to have the proper amount of neuronal tissue added... again, while maintaining the delicate balance that results in consciousness. This is something that would be much, much harder than fixing spinal cord injuries, like the one that paralyzed actor Christopher Reeve, and while progress is being made for injuries like that, it is much different thing entirely to reconfigure an entire human brain. It would be akin to taking a chimpanzee's brain and reworking it so that the chimp thinks and acts like a human-- all without killing the chimp!

This is a very hard thing for many parents of autistic kids to accept. They want their kids to be normal, and they want to believe... they want to believe that there is a cure. They think that with enough vitamins, ABA, Floor-Time, secretin, GF-CF, chelation, et cetera, they can make their kid normal. Those things may have their uses, but they're not going to make an autistic into an NT. Regardless, there are quasi-experts going around speaking at conferences, all but claiming that they can fix an autistic kid (but it'll cost ya!). I ask that you do some research into neuroscientific discoveries about autism and brain construction before believing any of these claims of curation. These are physical differences in the way neurons are laid out in the brain... nothing is going to change that layout. That is what a real cure for autism would require.

What this means is that a "cure" for autism is more likely to take the form of autism prevention. The most likely scenario for this is to develop a DNA test for a predisposition toward autism, and to have parents selectively abort fetuses that show the genetic markers for autism. I have a big, big problem with that. I have the genetic markers for autism. People with AS (Asperger's Syndrome) have the genetic markers for autism too, as is proven by the coexistence of autistic and AS children in monozygotic siblings (identical twins, triplets, et cetera), which share exactly the same genetic code. I might not exist if my mother's amniotic fluid had been tested for genetic markers for autism when she was pregnant with me, and if some well-intentioned doctor told her horror stories of what autism could do to her life. A lot of wonderful people, some that have contributed immensely to society, may never have existed if there was a genetic test for autism.

So, when I argue against a cure, I am really arguing two points, corresponding with the two paragraphs above. First, I am arguing against trying to force an autistic kid to act normally through behavioral intervention, because that's not actually curing him. No matter how the kid is trained to act, the brain in his head will be thinking autistic thoughts. Forcing him to act like an NT when he is not an NT is a very stressful way for him to live, and it usually causes a host of problems once the child grows up. I get to see autistic adults that had this stuff inflicted upon them as kids all the time, and a lot of them end up attempting or committing suicide when they realize that they are still the defective people that their parents and their tutors had told them they were if they were not normal. While some normality acts learned in this way can fool normal people into thinking the kid is now normal, the person who has to carry on the act is never fooled. Ask any one of my kind that has had to live behind this sort of mask... ask if they ever thought they were normal now. We know we are not normal... it takes way too much conscious effort and hard work to pull off the act of being normal for us ever to think that. It would be like someone asking a normal person to act like an autistic person, mimicing autistic movements, speech patterns, interests, et cetera, for the rest of your life, with no breaks, ever. This is a horribly cruel thing to do to someone, even if the intentions are good.

The other point I am arguing is that someone who is already developed and who is unable to live independently is not going to be cured. That person will always be autistic. Now, I must quickly add that this does NOT mean that the person will always be helpless and requiring of care. If the goal is to help the person learn to take care of himself, communicate his needs, or live independently, I would say those are wonderful, laudable, reasonable goals. Now, for someone that thinks that autism equals helplessness, this next point is hard to accept. You can help the autistic person to do those things without curing the autism. I can't emphasize that enough, because this is the one point that so many people refuse to understand. They have to let go of the incorrect definition of autism as a condition that completely prevents learning and development of skills that will allow someone to live independently. With that definition, the only way to help an autistic person to be independent is to eliminate (cure) the autism, which leads them to latch onto the "cure at any cost" mentality that ends up doing more damage to their kid than they can ever imagine. The fact that there are _many_ autistics that have life skills, that can communicate, that can live like real people, should be proof that you do NOT need to cure the autism to give the person a chance at life. Curing the autism is not reasonable or possible, but that does not mean that there is no hope.

Unfortunately, some people are still so wedded to the idea that autism equals horrible disability that they want to wipe autism out entirely. The aforementioned woman who told me that no one was out to cure people like me eventually admitted that she wanted to wipe autism off the face of the earth. The truth is that this is what all of the CAN people really want. They hate autism; to them, it is the name of a stealthy foe that took away the kid they wanted and replaced it with one they did not want. Few would ever admit not wanting their kid, but this is really the way it is. The dissonance this creates is a source of tremendous guilt in these parents, and that causes them to take often ridiculously dangerous chances in the name of defeating this foe that has caused them so much pain. This is a very personal battle for them... they see autism as a demon that stole their dreams of a normal child, and they want to kill that demon at any cost.

That attitude is understandable, but horribly counterproductive. The "war" mentality that this attitude causes is very stressful to the kid, and stress is a terrible thing in the life of any autistic. It causes a lot of the autistic behaviors to get worse, impedes learning, and is very unpleasant to the autistic. If the parents would call off the war and recognize that autistic kids CAN be educated, they CAN develop and mature, they CAN go to college and get a job and live like a real person, maybe they would not be so driven to defeat the autism. That is the kind of CAN that I like... the one that says that no one is hopeless. I, and people like me, are proof that autistics can grow up and be able to live as adults. You can work within the autism to help the autistic kid grow and mature, but you have to quit looking for a complete cure that is going to suddenly make things the way you wish they were. Ultimately, the feverish search for a cure, and the refusal to accept anything but complete defeat of the autism demon, are a form of denial. It's denial that this is what your child really is, that autism is what he is more than what he has. For the sake of the child, they have to drop the attitude that autism is some kind of parasitic demon that fights to destroy the life of the child and (by proxy) his parents.

Autism is not at all like a bacterium that invades a body, and which must be killed for there to be any improvement in the condition. That is obviously how many people see autism, though; they talk of how their child "became" autistic, as if that is when he caught the bug that causes autism, and they talk of a cure, as if it were some kind of antibiotic that will kill the germs. The cure for which they seek is something like penicillin, in the bacteria analogy. This is a very flawed way to look at autism, one that is borne of ignorance. To someone that does not understand how deep the neurological differences run, it seems plausible that there is something, some enzyme, some hormone, some nutrient that is missing, some simple thing that, once discovered, will get rid of the autism, like water on a fire.

Autism is what someone is, not what someone has. It is not a disease, with a specific external cause and a specific remedy. It is a condition that is permanent. It is also a condition that does not automatically mean that the person will live a life of disability. The goal should be to help the autistic person develop into the best adult he can be, not to cure the autism. The former works with the child, building him up; the latter works against the child, tearing him down. Doing the former means dropping the grudge against autism and accepting that it is not a thief that stole your child... it is simply a name for a very different kind of child, one that, at birth, has just as much potential as any other child. Remember that it is not your child that has the grudge against autism-- it is simply the way he is; he has no concept of autism or normality. It is the parent that has the grudge, and that can make her fail to realize that the war on autism is something she wants, not something the child wants or needs. It is very hard for such a parent to accept that the war on autism is not in the best interest of the child; she is so blinded by her hate of this autism demon that she is absolutely convinced that fighting that demon that has abducted her child, no matter how long the odds, no matter what the collateral damage may be, is the right thing to do for her child. Living with the demon is unfathomable to them. They cannot believe that the child can ever grow as a person and mature with that demon still attached.

The bottom line is that it is very possible for autistic children to grow into self-sufficient autistic adults. Much of the time, the emphasis the parents have is on curation of the autism, and that does not work; the autism always remains. That approach is the one that was tried while most of the non-self-sufficient autistic adults were growing up. It is silly to keep butting one's head against an immovable rock; trying to cure the autism is akin to that. Instead of trying to destroy the rock with the head-butting, why not work with the rock and just go around it, leaving it in place? That approach works (and is in fact the approach used by the newer and most effective autism therapies you may read about), and if the focus of research was on learning new ways to parent autistic kids, rather than curing autism, it would work much more often.

A child's brain is far from being fully developed at birth. All children, autistic or normal, are born nonverbal, helpless, and unable to do the slightest thing to take care of themselves. While the basic structure of the brain, which determines (among other things) whether a child is autistic or not, is already complete at birth, the majority of the neural connections, the ones that dictate the ability to communicate or think, have not been formed yet. The brain is simply too complex to be described entirely in DNA, so the neurodevelopment process is guided by patterns of stimulation in the existing neurons in the brain. If the child is normal, there are no real barriers to development; the child thinks and looks and learns almost as if by osmosis. As he does, the new neurons that are formed as his brain grows are placed according to how the child uses his brain. If he thinks in a logical manner, more neurons are added to the part of the brain that does the logical thinking. If he hears sounds, the part of the brain that processes sound is built. When the child begins to realize that some vocal sounds have meanings, the part of the brain that processes language begins to develop. (maybe because they believe that autistics are emotionless and cannot form bonds with anyone, With an autistic child, there are often barriers that prevent these things from happening.

Sensory issues may present such a jumble of stimuli that the autistic infant cannot make sense of any of the things he sees or hears. He can't form a concept of what the world is, and that means he can't think and wonder and be curious about it. If he hears language as a jumble of disconnected sounds, the part of his brain that processes language is never stimulated. His brain's new neurons are not placed in a manner that enhances function, but instead in a random way that reflects the manner in which his faulty senses perceive the world. So while his parents are trying various stressful therapies to rid the child of the "disease" of autism, or worse, are not trying to bond with, engage, stimulate, or educate their child because someone irresponsibly told them that the child was a lost cause, or because they just don't know what to do with this unusual child), his brain is rapidly developing in a random, haphazard manner that does nothing to enhance his level of functioning in the future.

The primary task, in the first few years of an autistic's life, should be to engage the child's brain, to get the sensory net to develop enough to begin presenting a coherent view of the world, so that the child can begin to form a concept of the world. He'll still be autistic, but he might just surprise you with what he is able to accomplish, if you can get his brain engaged early enough. That's what I mean by working with the autism, not trying to defeat it.

I am not suggesting that working within the autism to raise the child is easy; it's not. Raising a normal child is not easy, and raising an autistic child is harder than that... sometimes much, much harder. I wish it were not so, but with the limited knowledge we have of autism, it is likely to be this way into the foreseeable future. I'm also not suggesting that my way is a guarantee that any given autistic person will grow into a self-sufficient adult. There are no guarantees in life. I am telling you that you stand the best chance at having your child grow into a self-sufficient autistic adult if that was your goal from the beginning.

It is pretty obvious that what we know about raising autistic children is minimal indeed compared to what we know about raising normal children. Even so, what is known about raising autistic kids now is a huge improvement over the state of affairs only ten years ago, and the prognosis has improved accordingly. Right now, the biggest thrust in autism, and in autism research, is to find a cure. That's just more head-butting against that rock, isn't it? Imagine how much we could learn about helping autistic kids to become functional autistic adults if that (helping autistic kids become functional autistic adults) was the focus of the research, and of the parents whose demands and money drive that research.

Some people want to insist that almost all autistic kids will grow into adults that will never be self-sufficient, and because of that, autism must be cured. Even if it were true that most autistic kids will never grow into self-sufficient adults, and it is not, it still would not mean that curing the autism is the best thing to do. Maybe the thing to do would be to find a way to help autistic kids grow into self-sufficient adults... from a research perspective as well as from a parental perspective. Is that really so hard to understand?


Gibo said...

this is very enlightening. thanks.

Crazy Chel said...

I am very impressed with how you have explained this. As the mother of 3 boys on the spectrum and as the daughter of a man I now realize has Asperger's, I have a unique perspective of children & adults with Autism. My oldest was 11 before he was diagnosed with Asperger's and my younger boys are still "too high functioning" for the schools to offer any assistance.
But I love your attitude and it is very much how I have tried to raise my children. I see their amazing talents in math, music and art; my 7 yr old's perfect mimicry of comedic timing; and I love the fact that my oldest can't (no matter how much trouble it would deflect) lie to me. :)
My goal for them is to help them see and become the best person they can. Being able to care for themselves and appreciate their gifts is all any one really needs.