Some very unfiltered thoughts on autism

What is autism?

This is a question we cannot yet answer. As painful as it is, and as tempting as it to make any and every attempt to presuppose its origins and roots, we really have no idea what autism is and where it comes from. There is an important humbleness that comes with acknowledging this; the openness of not knowing, of being open to the possibilities. This is not something our current culture is very good at (maybe this is the cause of autism!) We, especially in the Western paradigm, have a hard time admitting and embracing that we do not know something, for fear of seeming ignorant or stupid. Unfortunately this sort of addiction to knowledge has led us away from an inherent wisdom in that openness to not knowing. We create answers, we develop scientific studies that support these answers and until someone comes along and does a different study we say this answer has been "proven" implying it is true. The paradigm of western science has a wonderful place in the overall search of knowledge and understanding, and is not something to chuck out with the bath water, but if we are to clean the preverbial baby, then we might just need to acknowledge that our water is dirty and can be changed. (that might not make any sense:) But how can we search for the answer to autism without the rigors and "certainty" of the scientific method? Well, fear not, there is a way.
First, just sit in the question. Just allow the unknown and the curiosity to be there, just as it is, without needing an answer. This I can only imagine is not something any parent of an autistic child would ever want to here, and also would never have the time for in the first place. But by sitting in the question and truly accepting what is: that we just don't know what autism is and where it comes from, then the answer might not be as important as just focusing on what we do know. A friend recently shared a theory about the misguided thought processes of most humans today. Her idea is that people often go through life from a have-do-be outlook. That is, we focus on what we must "have" that will allow us to "do" whatever it is that will allow us or make us "be." An example: I want to be an artist. I cant be an artist because I dont have paint. I will get paint, then I can paint, then I will be an artist. Or in the more relevant example: I need to understand autism so I can understand my child. I can't understand autism because I don't have all the information. I will get all the information, then I will understand autism, then I can understand my child. But what if we switched that system around? What if instead of have-do-be, we acted from be-do-have? This would look something like: I am an artist. I will make art. I will have whatever I need to make art, or I will be able to make art with anything. Or for this situation: I will focus on understanding my child. This will give me information as to what autism is. From this information I will understand better what autism is. A direct and notorious example of this is the Indian woman and her son Tito. This woman was told that her son would probably never learn to speak, read or write or do many things a normal child could do and that her child was probably going to be retarded. She happened to be a fiercly persistent woman, with a powerful sense of confidence and conviction and took it upon hersolf to quit her job and make working with Tito her fulltime job for the next twelve years, every day. She worked tirelessly with Tito, and through observing what worked and what didn't, she developed a totally new method for working with children with autism (called the Rapid Prompting Method) and taught Tito not to speak, but instead to write what he wanted to communicate, and actually write poetry. He has become somewhat of a hero in the autism world, for he is now able to communicate clearly (on his own) what life is like for him, and how he relates to the world. He is unbelievably eloquent, and his poetry is widely published (IS IT?) This is all due to his mothers willingness to simply begin with where her child was at, and where she was at in her understanding of autism. She did not begin with scientists or studies, in fact she didn't have any scientific backing (and still doesn't) for the approach she eventually developed. Just through opening up to noticing what she could actually know and observe with her child, and not needing any answers or magical cures, she was able to give Tito what he needed, thus in the be-do-have way, bringing Tito into the world of relating and communicating.

Autisms inner conflict:
the battle that tares us apart and the humbleness that will bring us together

There is so much controversy, corruption, confusion, and finger pointing in the world of autism today, that we are missing the exponential power of finding community with each other. There are, at the moment so many different organizations, groups, advocates, and individuals who are seeking to understand autism and how to help those with autism. Although one of the fastest growing fields of study and interest, autism is still very much a mystery to everyone. Unfortunately, this may be the only thing these different groups can actually agree to regarding autism. Yet there is no room to fully embrace this mystery, and while anyone will include the lack of knowing in the forward to their book or somewhere on their website, but from there it is a battle for who can claim the most scientific, or the most effective. The people on every side are so heavily invested in proving the validity of their beliefs or practices that the only acknowledgment of others is often in attempts to negate or refute. One father of a child with autism expressed his distress at the current paradigm of support and assistence: "They come up with a new 'miracle' every four years - first it was elimination diets, then magnesuim and vitimin B6, then forced-holding, then operant conditioning and behavior modification - now all the excitment is about auditory desensitization and FC. (Sacks 1994) It creates even more challenges for a parent, in trying to sort through or decide which side of the fence they want to build their camp on and even gives the false hope that something might actually "cure" their child. There are huge emotional investments for and against the use of vaccines in young children, there is political and business conflicts for those in the pharmaceutical companies and the masses who strongly oppose them, there are the variety of different treatment methods all claiming to be the new solution to "fix' your child, and the list goes on and on.
There is so much conflict in the autism community that using the word community to generalize anyone associated with autism is sadly more of a joke than a generalization. There is this sense of violation in much of the rhetoric and energy from one side, and then this sense of confidence and an eerily manipulative tonality from the other side. I am maybe making a general segregation to just a two sided conflict, but it is more than that. It is the underlying lack of openness from all sides. An openness that comes with the humbleness of really knowing that we do not know a whole lot about autism at this point. From there we are able to acknowledge that there are grains of truth in each view and belief. But in this case, this is easier said than done, and there are hurdles and blocks that may not actually be overcome, but must be acknowledged. It is obvious that some of the disagreements among the autism community will never be worked out, and are just going to be there, such as the vaccine issue, but this doesn't mean that there can't be an air of collaboration and cohesion. Working with something so connected to the underlying energy of things (ie that people with autism are incredabley sensitive and reactive to energy) it only makes sense that there should be a collective awareness of what the energy being put into that collective is. If the energy is negative and defensive, might that affect on some subtle level, the effects of current treatments, and just the levels of progress and the direction of progress. On the more tangible realm, by working together, wherever possible, depsite differences, there would be more opportunity for raising awareness and actually using differences to stimulate constructive conversation and raise the potential for new ideas and practices.

Treatment/therapy - working/being with children with autism
Parent-centered therapy and IPPs

Parents don't spend years training to work with kids with autism. It probably isn't their immediate life passion, or even gift. We put so much emphasis on bringing kids to "the ones who know" who might have the right personality, or ability or knowledge to work with a child with autism. As wonderful as it is to have specific people allocated to work and be with these kids, there are people who are also going to be involved, and have a whole lot more influence over the development than that person who sees them once a week for an hour or two, or that teacher who sees them five days a week, along with fifteen other kids with special needs. Parent centered training and approaches are the stepping stone to healing for these children. By focusing on teaching the parents how to be effective, by making IPPs (Individualized Parenting Plans) if I dare coin, then we can utilize this resource and opportunity for creating a theraputic environment all the time, not just at school or in the therapists office.

Random Thoughts
while reading autism a holistic appraoch

Anthroposophy believes that autism is a problem of ego-integration. Ego integration is the process of spiritual being coming in, and incarnating into a body (and personality) to work out its karma through social relationship. This focuses on social relationships to give context for ego-integration and connection with others as key to becoming an identifiable human (P144) Ego has three diffferent bodies: physical body (comes when born) etheric body (comes around age 7) and astral body (comes around 14) explains using sleep: when asleep we lose our connection to self-consciousness, identity and personal memory, but still have connection to astral body and etheric body (but they rise out of physical body) and when we awake, we re ego-integrate into self-consciousness and identity...For autism there is trouble with this, and often there is trouble falling asleep or waking up (re-integration is challenging or doesn't happen smoothly!) WOW (p147)

Steiner gave great important to first stage of life called it a pre-eminently imitative being before one loses their baby teeth. believed at this stage kids were highly sensitive and vulnerable to feelings and even thoughts, and whatever is around they will imitate. For autism this is huge because this stage of development brings so much to who we are and how we connect and develop a self (in the context of other selves we are exposed to) and for the child with autism, who doesn't acknowledge others, the fruits of this developmental stage are lost (and only slowly built) as Wing puts it: "Imitation is one of the skills that is basic to developing social behavior, so its impairment is a significant part of the autistic picture" (p148)