Autism Consulting Service   

I first came across this quote when I was in the midst of my Master's Program in Individual, Marital and Family Therapy and I have kept it on a tattered sheet of paper ever since, not only as a reminder of what I expect from the teacher's I am working with, but what I expect of myself and, in all honesty, of every other adult in the world. We all have the power to react positively or negatively in any situation and in with any other person because we own our own reactions. When it comes to raising children the choice of reaction is more important than when we are dealing with adults, as our choice will forever be a part of the development of that child. When we earn our living teaching children our responsibility is tremendous. I know because, as an adult, I still carry the scars of a vicious and unhappy grade one and two teacher who beat me and picked on me for the two years I spent in her classroom. This doesn't mean that I can use her as an excuse not to succeed as an adult but that I am very aware those experiences have had a life long impact for me. When we were foster parents we were warned not to assume the child was going to be with us for the rest of our lives. In the midst of that warning lies another that is even more important to remember. The memories that we create with this child will be carried by him or her for the rest of their lives whether they are good or bad.

 

I find that autism is a unique area when dealing with factors like this. I'm not sure what it is about: the lack of understanding we have for them based directly on our experience;  the myths that surround autism which allow us to believe that they do not have memories, feel emotions, or understand what is happening to them; the impairment in communication which means we don't have to listen to their side if we choose not to make the effort; the horrendous messages that we receive via the media that they are hopeless, so anything we do is all right; or an individual reason unique to only the person holding it, but humanizing the education of those on the autism spectrum appears to be far from reality in the majority of classrooms I spend time in. This doesn't mean that people aren't trying; that their hearts are not in the right place; that they don't want to do their best. It just means that we are missing the boat most of the time. And that boat is based on taking full responsibility for our own reactions every minute of every day.

 

This message is not aimed only at teachers but at everyone who makes decisions for and interacts with anyone on the autism spectrum. This includes the teachers, the administrators, the classroom aides, the speech language pathologists, the physical and occupational therapists, the parents, the grandparents, the medical professionals and anyone else who has the power to make the difference in a child's life. Taking full responsibility for your reactions is the major step in determining whether the child you are working with will survive childhood and puberty with their self esteem intact or will face adulthood with these kind of memories:

" Like many muted with autism, for me personhood came after a blisteringly painful and lengthy moratorium of hopelessness, prejudice, anger, uncontrollable behavior problems, fear, and profound loneliness."  Barb Rentenbach.....letter to Time Magazine.

Last week I read a letter on the internet in which a woman offered a list of excuses as to why a mother would reach the point of murdering her own child. As I read the letter I can well understand and accept the frustration that this mother felt, the fear the she experienced finding and choosing treatment options, the horror she faced when these treatments didn't live up to the promises that she had been given. In desperation she chose another option. To take her child's life. But in the midst of that understanding and acceptance I am faced with the cold reality that we have to stop using excuses at this point. The lives of too many people are at stake. The future of our society is at stake. It is time to move on from excusing to the point where we make people take responsibility for the decisions they are making and the actions they take with those with autism. There is no real, acceptable excuse anymore. We know far too much.

 

Up until 1984 the voices of people on the spectrum were effectively silenced by the rest of us and we could say that we didn't know what was going on in the heads of those on the spectrum. That year Temple Grandin's first autobiography Emergence Labled Autism  was published and a door was opened. Since that time the number of autobiographies available have surpassed 100.....it's been a few years since I last counted.....if you add in the articles written, the presentations given, the information shared via the internet and the videos and auditory tapes available I am sure we would surpassing the tens of thousands mark. There is a consistency in all of this material that we must begin to  pay very close attention to because in this information lie the answers we have been looking for or at least claiming to be looking for. I really have begun to wonder if we want the answer. There's a awful lot of money to be made keeping autism a "mystery". There's a lot of pity to be sucked in. There's a lot of excuses one can use. If we don't have the answer, we don't have to take responsibility for ourselves because we can't? Or must we? I think it is time that we start making people face their own responsibility for placing barriers in the way of those on the autism spectrum. Only then will the picture begin to change to the positive.

 

So what do we know about autism at this point?

 

1. They are very intelligent, usually far beyond most of the rest of us. They learn very quickly, often with just a quick glance. They have detailed memories of everything that has happened to them throughout their lives and these memories often reach further back than most of ours do. For example, many of them can describe what it felt like to be diapered as a baby, etc. They have vivid imaginations and create incredible fantasy worlds to entertain themselves in the midst of the boredom we surround them with. They are very logical and confused by our claims that we are, The reality is that much of what we do and/or say makes no logical sense at all.

 

2. Their major impairment is communication which means that they have difficulty letting us know what they know and understand. They cannot ask questions and so they figure out the world by themselves. They are very adept at letting us know what they need if we pay close attention to them and/or will get their own needs met if we don't get in the way. They are adept at problem solving often using unique and intriguing methods that the rest of us are blind to.

 

3. Their sensory system is working at a higher level than that of the rest of us, so environments that are safe and comfortable for us are often overwhelming and anxiety provoking for them.  Heightened levels of anxiety are effectively decreased through the use of the behaviors that we are so uncomfortable with and define as "inappropriate" without any idea what they are used for. Heightened levels of anxiety also lead to a reduced ability to communicate and socially interact with others.

 

4. Many of them experience motor difficulties which means that they cannot make their bodies follow through on what they want them to do. We can help them with this or we can ensure that we create bigger barriers for them by not understanding or accepting these difficulties.

 

5. Emotions, like everything else in autism, are experienced at a higher level than normal and lead to heightened levels of anxiety, whether they are positive or negative. They are the same emotions that all of us experience so don't give your cruelty the excuse that the child does not understand or feel things like the rest of us do. They communicate these emotions through behavior because they cannot communicate them clearly to us verbally.

 

6. In spite of all the research to date, there is not a single medication that has been validated to be effective for autism. Although a few may lead to a decrease in certain behaviors in the end they do more harm than good, especially if we have not taken the time to gain a clear understanding of what the behaviors are communicating to us. Resorting to a recommendation to medicate is a total cop out of one's responsibility.

 

7. It appears that most people on the autism spectrum experience biomedical problems of one nature or another which also lead to a heightened level of anxiety, this time coming from within. They need a clear understanding  and acceptance by a medical system that is open to them, instead of that which we currently have: one which believes that they are hopeless so there is not use to look at their medical concerns.

 

8. At this point the majority of adults on the autism spectrum spend their days in twenty four hour care with residential service providers and day services providers. This is the clearest indication that we are failing as a society when it comes to this group of people. Research indicates that only 5 percent are employed and less than 2 percent of them in jobs that are meaningful, meet their intelligence capacity and allow them to live comfortably. Those 2 percent were all fully included in regular classrooms during their education. They come from all functioning levels....it is not where they started that proves to be important but the opportunity to be educated with their peers that makes a difference. Segregated classrooms lead to dependent lives.