Saturday, June 23, 2007

Build the Autistic, Don't Tear Him Down

While most of the feedback I have gotten from this site has been quite positive, there have been a few letters (okay... two of them) from people that don't seem to get what I am saying. One letter is just a singular thing... two letters, even two letters among many times more letters saying the opposite, constitutes a pattern. I have to wonder how many others did not get it and did not write about it. Thus, I decided that I would address the issues directly right here. Now, certainly, I know that I cannot reach everyone, and that a good percentage of people that do "get it" will not agree with my opinions. That's fine, of course; I do not pretend to be the final word on anything. What you see on this site are my opinions, and while they seem to be pretty representative of those held by autistics, they are not intended to be interpreted to be anyone's opinions but my own.

The two letters of which I speak had a number of similarities. Both were from people who cared for an immediate family member (a brother and a son, respectively) that was profoundly autistic, and both questioned the relevance of my statements here on this site on the basis that I was obviously much higher functioning than the person they know. I suppose they think that because I am autistic and relatively capable, and their family members are autistic and relatively incapable, that I have nothing to offer them in terms of insight, that my views that we have a right to exist without being forced to be normal are just not relevant. While it is true that I am not as impaired as someone that is profoundly autistic, it is also true that, in each case, I am closer to being profoundly autistic than the person claiming that I am not autistic enough to write authoritatively on the matter. I would add that it is not about how autistic I am; I am not trying to get people to take what I say on my authority as an autistic person, and to believe it mindlessly because of my neurological configuration. I'm not... not by a long shot.

This site is offered to give people a glimpse into the perspective of one autistic person. I make no promises that other autistics will think as I do. That is so obvious to me that it seems silly to write it... one cannot expect all autistics to automatically agree on anything, any more than one would expect all neurotypicals to agree on something, just because they are all normal. This site is offered to provoke thought, to make people ponder whether curing their son's, their daughter's, their sibling's autism is really something that they should be trying to do. I do not expect people to swallow whole what I write, to accept it without skepticism because I have the right credentials (being autistic, of course). It has been a complaint of mine that NTs, the "big picture" folks that they are, tend to want their facts pre-chewed and served to them ready to accept, with no investigation or critical thought necessary. They tend to want you to tell them just the "gist" of what you are saying, and they will accept or reject that "gist" based on their perception of your credibility on that topic.

That is not my thought process at all. I am a detail-oriented being; when I am attempting to communicate a concept of some sort, I tend to include all of the detail, and to all but ignore the "gist." My mother used to always accuse me of "using a thousand words when a few will do." Maybe a few would do for her, or for most NTs, but they do not for me. I need to know how someone arrived at a conclusion; I am more interested in the facts that support that conclusion than the conclusion itself. I will take those facts and analyze for myself whether they fit the conclusion or not. I have no concept of being able to separate the "gist" from the supporting facts; although people tell me it can be done, it seems rather silly to do so, and I have never really been able to do it. As such, when I make an argument for something, I tend to do so with logical supports and a virtual barrage of facts. This is how I think. The articles on this site are certainly no exception to that. When I write an article for this site, I expect my reader to consider the facts that I have presented, to ponder whether the premises fit the conclusion, and to apply that to their own existing knowledge base on the topics on which I write, and to see how it fits. This, for me, is how every word I read, every word I hear, is interpreted.

Apparently, though, this is not how some people read this site. Maybe they skip over my supporting statements and work to extract the "gist," and then consider whether or not I have the credentials to make that statement. Maybe the title of the article itself is sufficent to give them the "gist." For a person that is big-picture oriented rather than detail oriented, and who is more swayed by such social hierarchy concepts as credentials or fitness to write about a given subject, I can see how that would happen. People that use the gist extraction method are easily fooled by salesmen, scam artists, politicians, and others that are able to make themselves appear more credible than they are (usually with body language). This method relies on someone else's ability to come to a conclusion about a given topic, and to accept or reject the conclusion that person reached without knowing what their premises were. I can't imagine that people would do that, but I see evidence of this kind of thought on a daily basis. I find it amusing that I am considered "impaired" because I do not think that way.

Critical analysis does not come naturally to NTs, apparently... I can recall much emphasis being put on teaching critical thinking skills when I was in college. NTs are often able to get by in life almost by instinct... their NT ways are so well accepted by the populace in general that critical thought hardly ever becomes an issue. For people that have no such social instincts, and for whom the very act of interaction is, on some level, unnatural, every little tidbit of information encountered must be subjected to analysis.

By now, at 31 years of age, I have become quite good with critical analysis and logic; it is only because of my abilities with logic that I have been able to generate cognitive approximations of normal brain functions, like theory-of-mind. I had to learn theory-of-mind; I did not have it when I was five years old or so, but I do now. Normal kids possess inborn theory-of-mind; mine is a logic-based simulation, springing from an observation I had years ago that others' thoughts and motives were different than mine. Many of my more normal-like abilities (like the ability to understand abstract concepts) are cognitive simulations of normal function, and at the core, are composed entirely of a set of concrete and logical rules. I have no idea how obvious this is to others, but I am patently aware of the cognitive nature of those things, as it does require significant thought to maintain these abilities.

It is my hope that people will take what I have written here and consider it on the basis of the premises that I offer. I aim to make people think about what they are doing with regards to their autistic children.

Most disturbingly, both of the writers seemed to think that my statements that autism should not be "cured," that the goal should not be to "fix" the child, were the same as saying that we should just let autistic kids be, and not try to help them in any way. I just do not see how anyone who has read more than the table of contents of my page can really think that is representative of my views. Probably the most oft-repeated statement on this site is that I would like every autistic person to be the best, most capable autistic person he can be. Nowhere in that statement can I see where one might "read in," as NTs are prone to do, that I am not in favor of trying to help autistics become self-sufficient, to overcome the disabling components of their condition, to be adults that do nor require guardians or institutions to get them through the rigors of daily life. I have written in a number of articles about the ways that I suggest that autistic children can be educated and prepared for their future as an autistic adult.

What I argue against is an attitude. I argue against the idea that autism is an enemy, a child-stealing demonic disease that must be battled back, in order to free the normal child inside. I argue against the notion that teaching methods that are designed to work with autistic kids instead of normal kids are something heroic, something that deserves to be called "intervention," whereas teaching methods for normal kids are simply called "teaching." I argue that it is wrong to assume that any progress on the part of the autistic kid is a sign that the war on autism is working, that the child is becoming more normal. I argue that it is wrong to assume that the autistic person is static, that no progress is possible, that no self-care or communication skills can be learned, without "battling back" the autism. These are the things for which I argue.

Inherent in this misunderstanding is the false dichotomy that many NT parents of autistic kids share. To them, the only two choices are "autism, the way he is now" and "complete recovery." If I argue against trying for "complete recovery," the assumption is that I must, therefore, support the other choice in that false dichotomy, which is "autism, the way he is now." Any argument against trying to normalize the kid is seen as an argument that the kid should be left as he is now, for the rest of his life. This is what some people think, despite my many statements about the things that can and should be done to give autistic kids the foundation for life skills that will help them to become as independent as possible. It is ironic, but this scenario seems a lot like a theory-of-mind error on the part of the NT. They think that there are only two choices with regards to how to parent their autistic kid, and so they fail to realize that others, like me, see other choices than the two that they offer, even when plenty of evidence that there are other choices is presented.

I do not take a static view of autism. By that, I mean that I do not have an assumption that an autistic person, especially a child, will remain exactly the same as he is now, unless some of the autism is removed. Parents that have nonverbal autistic kids that show no interest in others, that have behavioral problems, et cetera, assume that this "autism" thing cements the kid forever at that developmental level, and that the only way to make any progress is to chip away some of the autism. For them, speech skills, behavioral skills, et cetera, are normal things, and to teach those normal things to an autistic means that some of the autism has to be deleted to make room for the normal stuff. That's nonsense. I'm sorry to burst your bubble if you think this, but you do not get to lay claim to communication skills, behavioral skills, self-care skills, as normal behaviors. The acquisition of those things, in time, is normal for a developing NT child, and they are normal for a developing autistic child, too. Surprise. The goal, with an autistic child, is to find out where the barriers are to such development, and to work to remove those barriers. That's not battling the autism... that is simply being a parent. That is what parents do... they help their children to learn, to develop skills for the future. Why would it be any different with an autistic kid? The fact that there are many more barriers in the case of the autistic child only means that you, the parent, will have to work much harder than if the child were normal. That much is obvious.

The goal for an autistic child, once again, should be for him to be the best, most successful autistic adult he can be. I've written that a lot of times on this site, and I have assumed that its meaning was self-evident. In case it is not, let me explain what I mean, and have always meant by that. I want autistic kids to be able to develop all the self-care skills they need to be independent adults. I want autistic kids to grow to be able to communicate their needs independently (in other words, with no facilitated communication), whether by speech, by use of assistive technology, or with sign language. I want autistic kids to grow into adults that are effective in their ability to self-advocate for their needs. I want autistic kids to grow into employable adults that can make a contribution to society, and who will enjoy doing so. I want autistic kids to grow into people that can consider whether they want to have children themselves, to be able to have social relationships IF they want them... to live as happy, successful, capable autistic adults. I think that is a nice vision.

What I do not want is for the parents, the therapists, the doctors, to push the autistic kid to be normal. That is a losing game for us. We're never going to be as good at being normal as you NTs are. Autism is a neurodevelopmental thing; you are not going to remove the autism by training the behaviors away. All you are going to do is make the autistic ashamed of who and what he is, to think that his innate, real self is horrible, and that it must be hidden from view to gain the love and acceptance of the family and of society. I read a story in a recent issue of Autism-Asperger's Digest, wherein a mother assumed that her autistic child was too impaired to even have a concept of self. Thus, she thought that he could not have a self-esteem problem. Imagine her surprise and horror when her child told her that he was not happy, and that he wanted to die. This, from a child. The mother looked at her parenting technique, and she realized that while she had been saying "no" a lot, she had not been doing anything to let him know when he was doing well. Trying to train away the autism is, in effect, saying NO to behaviors that are inherent to autistics, that are a part of who and what we are. If you do not think that the kid is going to realize that his true self is being hidden by a mask of rote-learned normal behaviors, think again. Even low-functioning kids understand this.

I met, and got to know, an autistic male in his lower 20s. He still lived with his parents, who were overly protective of him. He was probably halfway between the upper limit for mental retardation and normal intelligence. His parents had done all they can to teach him to be normal. One day, after they had once again reprimanded him for some autistic behavior, he proclaimed, "I just want to be me!"

Unfortunately, the parents did not understand what he meant. I do, though, and I hope that the readers of this site will. The parents had been so busy teaching the kid to be normal that they inadvertently had engaged in a campaign to strip the youngster of his essence. He is autistic, and will always be so. In their efforts to help him live in this world, they assumed that only learning to be normal would really suffice. While they thought they were helping him, teaching him how to be as he should have been born, circumventing this nasty autism disease thing, the reality is that they were teaching him that he was unacceptable to them as he is, that he was unacceptable to the world as he is, and the only way to be acceptable is to be someone else. Even the lower-functioning people understand that the normal behaviors that we are supposed to learn are an act. We know that our innate selves are different, and that these rote-learned normality routines are not part of who we are. We "get it" when you tell us that our real selves are unacceptable, and that we must put on a mask and pretend to be one of you to be acceptable. This is not just a problem of the higher-functioning autistics like me... I have seen it in lots of autistics that are much lower functioning than I am. NTs underestimate autistics when they think that they are too impaired or low-functioning to form a concept of self.

The goal, as I have stated repeatedly in this article, should be to raise the best, most capable autistic person possible. The child should be helped to overcome the difficulties, the sensory issues, the anxiety that plagues all autistics, the barriers to communication. He should be helped to develop a set of skills that will help him live independently in this alien world. And he should have all of this done for him while his autistic self is preserved and celebrated. Teaching someone to talk, to care for himself, to live in the world, does not require an all-out campaign to make him normal. Educate the autistic kid, but don't try to destroy him and replace him with an NT. Teaching skills and coping mechanisms is a constructive process; trying to normalize and fight the autism is a destructive process. The autism is a part of the autistic, and fighting the autism is fighting a part of the person. You do not need to fight the autism itself to fight the disabling things that often come along with autism. Fight the disability, the dependence, the inability to communicate, but don't fight who and what the person is. Provide skills, but do not try to snuff out the essence of who someone is. Build up, don't tear down. Don't think that being normal is superior to being autistic... thinking that way leads to the illusion that forcing normality is building up rather than tearing down. It is not.

I hope that this clears things up.

1 comment:

Louise said...

Great post! You have so much to offer and your sites are a great resource that I will be coming back to often. Keep speaking up! cheers