Friday, April 22, 2011

Out With the Old

Leo Kanner has been credited with giving autism its name, back in 1943, after closely observing a small group of boys who exhibited unusual traits such as social withdrawal and problems with communication. He saw this as a condition or disorder separate from either an emotional disturbance or a serious learning disability. In the intervening years, much misunderstanding has muddied the waters of how we view what we call autism.

Some common views - all of them subject to many changes over the years:

(1) Poor parenting causes autism. If you are unfamiliar with the history of what came to be called "refrigerator mothers" I urge you to find the time to watch the video of the same name presented by PBS. This unfortunate (and unforgivable!) idea was still present when I first entered the field of special education in the mid 1960's. Thanks to Freudian thinking and "experts" such as Bruno Bettleheim, many children were removed from their homes and sent to residential facilities, their parents encouraged to "get on with" their lives.

While I can accept the possibility that poor parenting might cause the behavioral symptoms associated with autism to be even more challenging, it is far beyond my comprehension how a parent could endure the pain of being told it was all their fault that their child had this very puzzling, very challenging condition!

(2) Autism is a psychological disorder. Many of the children with autism who entered the public school system in those early years were given the label of "emotionally disturbed." Looking for a positive in this, at least that did NOT indicate a lack of ability to learn. But it did lead almost invariably to a program that was highly behavioral in nature, and if the usual techniques associated with behavior modification weren't working (they seldom did), the typical next step was a visit to the child psychiatrist to begin a regimen of psychiatric medications. For the most part, this involved the administration of drugs that were developed for, and tested with, adults with schizophrenia. It was all very new, and the process was hit or miss at best, trying various dosages and/or combinations of drugs until something "worked" - and then starting over again when that particular drug or drug combo wore off. All of this with kids who were unable to communicate what they were experiencing in their bodies.

(3) Children with autism are cognitively disabled, mentally retarded, or unable to learn. This is just plain WRONG, WRONG, WRONG! Unfortunately, you may still read in some places that up to 75% of those with autism are also cognitively delayed or disabled. My experience tells me differently. I will allow that they might test in a lower range, but that is a problem with our inadequate ways of testing and NOT in their ways of learning. If a person is struggling to communicate, and in addition dealing with severe neuro-motor issues, they are not going to do well on any of the standard assessment tools we have in current usage. I am ready to go way out on a limb and suggest the possibility that most individuals with autism are in fact highly intelligent - even those unable to speak - and we'd be much better off if we treated them in this way. Combining two of my favorite mottoes, we should always go with the "least dangerous assumption" and "presume competence!"

(4) It's all about behavior. True, we still diagnose autism based on outward behavior, since there is not a simple blood test that will help us out. We look for social withdrawal, difficulty with transitions, problems with communication, lack of eye contact, repetitive behaviors, poor play skills, and so on. I am OK with that, at least till something better comes along. But we err when we focus too much on fixing that behavior rather than trying to figure out just why it might be happening. Even more severe issues such as tantrums, meltdowns, aggression or self-injurious behaviors should be considered in light of what the individual might be trying to tell us. Possible medical problems, such as gastro-intestinal inflammation, any kind of pain, or sensory overload are all potential explanations for troubling behaviors. All kids can be manipulative, but when we have a child who is unable to let us know what they are thinking or how they are feeling, it is wise to give lots of thought to what they might be trying to tell us when they "act out." For what it's worth, the kids with autism I have known are far less likely to be trying to manipulate the adults in their lives than those who are not affected by autism (i.e., my awesome grandkids, who have been known to exhibit some rather challenging behavior themselves!)

(5) We must find the cure. There is no cure. Lots of research has focused on this. Many parents plead for a cure. And I am guessing most of society would agree that it would be wonderful if autism could be eradicted. But a growing number of people with autism are telling us that this is an offensive thought to them. They are who they are, autism is a significant part of that, and they don't appreciate it that we (the NT's of the world) are working so hard to get rid of this thing we call autism that makes them the unique and amazing people they are. When we hear of great scientists, artists, inventors, thinkers, and computer gurus who may well be on the autism spectrum, we should also think of all the world would be missing without their contributions. Suggestion: Read one of Temple Grandin's many outstanding books, or watch the HBO movie, "Temple Grandin."

I really don't think there is a cure, but I do believe many individuals have learned to live with their autism, and many more will do so in the future if we can offer them a supportive community that is both understanding and accepting of their differences. I have stated elsewhere that early intervention is highly effective - and critical. The combination of meaningful treatment options at every stage of development and proper supports in their lives can lead to lives that are happy and fulfilling.

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