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.

Monday, April 4, 2011

Autism - My Early Education

I chose special education as a career originally because there was a tempting chunk of financial aid available. The University was in the process of starting its first program to train teachers of the "mentally retarded" and I thought it might be worth a try. I had been going back and forth between a major in psychology (which I loved) and elementary education (which - as I had heard from just about everyone - would give me job security for the rest of my life). I was in my junior year and running out of money. Maybe, just maybe, this would work.

As it turned out, I truly enjoyed all my classes in special education and found myself saying, many years later, that "I really wouldn't need to get paid for what I do!" I loved it that much!

Along the path of my personal education, I was blessed with a variety of experiences and some wonderful mentors. Thinking back to my college courses, I am quite sure the term "autism" was never even introduced. By the time I was hired for my very first teaching job, we were only using two labels for kids placed in special education programs in the public schools: educable mentally retarded (EMR) or trainable (TMR). My first group of eight students probably included one or more who would have been more accurately described as having a learning disability, but I had still had not met a person with autism.

I took a few years off when my own children were young and then drifted into a part-time teaching position at a privately-run residential facility for kids with "infantile autism" or "childhood schizophrenia." Let the real education begin! Those were the days of blaming the parents, and of course especially the mother, so we had little or no contact with family members. We had two main treatment options: medications such as Haldol or Thorazine and behavior modification. I may have been hired as a teacher, but what we provided in the way of "education" was very limited because the kids presented us with such a wide variety of very challenging behaviors. How could we teach them if we couldn't even keep them in the classroom? And what should we teach anyhow? Their needs seemed so great! I found the kids charming and lovable, but felt terribly inadequate as their "teacher." What I didn't realize at the time was how much they were teaching me. I know it now and will be eternally grateful to them for their patience and persistence. I don't think I was a quick study.

That particular experience led me to a job in a segregated school for kids with special educational needs, where they were struggling to figure out how to help a young girl with severe autism - it was a county-wide school and she was the only one in the county with that label and unlike any student this particular school had encountered in its long history.

"Carla" was an excellent teacher. She and I spent the whole day together, including lunch and bathroom visits. She came to me from a temporary placement in a state institution, where I went for further training in the fine art of behavior modification. I also worked closely with her family, watching their interactions and learning from them what worked and what didn't. As an example of the latter, let me describe one of our walks in the hall.

I was taught (by the B-mod folks) to praise Carla for any appropriate behavior she exhibited (i.e. when she wasn't screaming, pinching, pulling my hair or head-butting me), so I might say, "Nice walking, Carla!" as we walked, and Carla would hear me and promptly sit on the floor. Now, because she was no longer doing what I had asked of her, I was to give her a 30-second "time-out." We were in the hall, no chair was available, so the time-out would involve 30 seconds of sitting on the floor (which of course she was already doing - how convenient!) I would then say, "Time out, Carla, no sitting in the hall." Do you see where this is going? I'd give her 30 seconds of sitting (in spite of the incongruity of it all) and then say, "Time out is over, Carla. Stand up." If she did, we could move on - at least until I praised her for walking and the whole process started over again. OR, if she didn't get up, we were headed into yet another time-out sitting there on the floor because she had refused to get up.

So many, many things went right for me as Carla worked patiently to teach me about autism. First, I quickly recognized that something was wrong. Then, I realized that nothing was ever going to go "right" unless Carla and I could come to some sort of truce and develop a relationship. And finally, Carla's family and my bewildered administrators were willing to trust my judgment and let me try to do things another way.

But, as I look back on that particular stage of my learning, I realize I knew very little. I had many glimmers of potential intelligence in Carla, but didn't dare go too far in that direction. After all, there was so little she could actually do and absolutely no consistency in her day-to-day performance levels. I was just starting to hear and read about the many sensory issues connected to autism, but had not yet put that information together enough to consider it as a possible explanation for all the screaming and other "behaviors" we were facing regularly.

What I had learned was significant, however. I knew beyond a doubt that it was wrong to blame Carla's parents in any way - they were very loving and supportive. They deserved our respect, not our blame! And I knew that the techniques of behavior modification were not for me. I was going to have to find a different route, and although I didn't realize it at the time, I would probably have to find it on my own because there really was nothing else out there.

Ah, but I had many wonderful teachers yet to come. I wasn't alone at all!

Friday, April 1, 2011

Missing in Action

It's officially Autism Awareness Month and I am determined to blog more regularly, and stick to the topic at hand. But first, I must explain my absence - from this blog and from just about every other important task that I have neglected for about six weeks now!

Living in Madison, Wisconsin (since 2004) has been a very positive experience, full of stimulating, exciting opportunities. And then sometimes it gets even more so. I will try to keep this as concise and nonpolitical as I can. It won't be easy.

Our newly elected governor, Scott Walker, has launched some very controversial budget proposals in an effort to regain some fiscal control. Starting back on Monday, February 14, a group of teaching assistants from the University have been doing everything within their power to call attention to some of the possible problems associated with these proposals. On that particular day, there was a march up State Street, from campus to Capitol, to deliver piles of valentines to the governor, saying "We (HEART) Governor Walker." They were trying to get his attention in a "nice" way. And I am trying so hard here to be "nice" myself - How am I doing?

Things moved rapidly from there and very soon the entire Capitol building had been taken over by the people of the state, drumming, chanting, singing, and shouting to be heard. A very brave group of 14 Democratic senators fled the state and stayed away long enough for the rest of us to catch up on what was happening and learn just what was included in the budget "repair" bill being proposed. Police and fire department members showed their support. Farmers drove their tractors to Madison and then around the Capitol square. Diverse groups of union members (and those who support them), disability advocates, families from all over the state and people of all ages have banded together to make a statement with regard to the drastic cuts facing our state.

I live just six short blocks (but it IS uphill part of the way!) from the Capitol and being the very curious person I have always been - plus the political junkie I have become in my retirement - I have been a regular visitor, checking out the action several times each week. I have been there among tens of thousands of demonstrators, and was there early one morning when only a few people were silently meditating on the floor of the rotunda. I have been there with two of my grandkids. I have been there when the doors were open to all, when the doors were locked to everyone, and most recently when one or two doors are open to the public and everyone is required to go through a metal detector, empty pockets, even get "wanded" if there's any question about what's setting off the alarms.

I will be heading there soon to join a dedicated group of people who are singing daily in the rotunda - an inspiring repertoire of union songs, protest songs (from way back in the 60's. I love it!!)and specially adapted lyrics to fit the current situation. Because it is spring, the demonstrators are now joined regularly by school groups on field trips and the common chant of "This is what democracy looks like" seems particularly appropriate as they visit to see how state government operates. There is no more drumming, but people use their car keys as accompaniment. Signs can no longer be taped to the walls, but they can be held in hands, propped against the pillars, or spread out on the floor for observers on upper levels to clearly see. The earlier food stations, information station, family care, first aid, sleeping bags, etc have all been banned - and I must say I miss them. It all added so much to the atmosphere. But the spirit remains, and is as strong as ever.

I will be checking on a man who is on a hunger strike. If I haven't lost track, today is Day #28 for him. He is only drinking water and taking potassium tablets, and says he is prepared to die if that's what it takes to bring this all to a halt. I first noticed him when he was on Day #10, spoke to him briefly one day last week, am following his blog, and cannot get him out of my mind.

In the early days, it was the drumming that stayed with me day and night (and not just when I was actually present at the Capitol - I heard and felt it as I fell asleep at night and when I awoke in the morning). Then it was the singing that stayed with me, and now it's concern for Matt's well-being. As passionate as I have become over the various issues we are dealing with, I don't want him to die. I don't want him to go on with this. And yet, I have the deepest respect and admiration for the courage he is showing and the statement he is making.

Tomorrow - back to Autism!